I wonder....

I wonder about a lot of things.......
I wonder if each of you reading this knows how much you mean to me?
I wonder what life would be like without so much financial stress?
I wonder is Madilyn's ear infections are ever going to go away?
I wonder if she's ever going to sleep through the night again?
I wonder what I'll do when she goes to school? what type of school?
I wonder if Madilyn is ever going to go back to eating somewhat normally or if being tube fed will always be part of our/her life?
I wonder is she will be self-sufficient someday or will she always need a caretaker?
I wonder if our therapists realize that most weeks they are the only adult interaction I have other than my immediate family and the teller in the checkout line?
I wonder what people think of me reaching out for fundraising help so we can attempt to breathe?
I wonder if I'll ever be able to go to work again or if full-time caregiver is my life?
I wonder if people, even those closest to me, realize just how often I cry?
I wonder if others realize just how much my children inspire me to be a better person?
I wonder if we will have to move away in order for my husband to obtain a better paying/benefits providing job?
I wonder if she'll ever be potty trained?
I wonder what it would be like to go to the grocery store without a set budget and meals planned?
I wonder if people know how amazing my son and daughter are with Madilyn?
I wonder if my husband knows how much he means to me even though I don't always show it?
I wonder if people know how hard it is for me to ask for help?
I wonder how long Madilyn will continue to do her new little war cry in her sleep before she lets out the tiniest little toot and contentedly goes back to sleep?  Meanwhile, I'm awake watching her wondering why on earth she does that?
I wonder if people truly get as excited as I (we) do about the tiniest little accomplishments and milestones finally being met?
I wonder if her doctors/therapists know how overwhelming it is to know we have to add even more therapists?
I wonder if people realize how lonely and overwhelming our life can be at times?
I wonder if our new friend realizes how much it means to me to finally have someone in our lives that we have so much in common with?
I wonder most if people realize just how much I love my life even though it's a struggle?

Even with all of these concerns and wonders swimming in my head every single day I am learning not to dwell on them..........I am learning to live in the moment and for each tiny blessing that we have in our lives..........I am a work in progress, we all are.......I have learned to never, ever take anything for granted..not even the tiniest minuscule amount of progress or gesture of kindness.....

I guess my point of this whole blog is.....everyone has worries and concerns...we all have obstacles in our lives, some we share and some we don't....you never know what another person is going through..
So in the rush of our daily busy lives I ask that you :
1. smile at someone and say hello......it may be the only interaction they have
2. hold a door for someone or help carry someone's groceries
3. brush off the car next to you in the parking lot
4. attempt to do a random act of kindness every single day...........I speak from experience when I say it can change someone's life....:)

Things to be thankful for

Today we are thankful for the little giggles that fill our home with joy.  We are thankful that we are all healthy and happy.  We have a turkey in the oven and a roof over our heads.  We have children scattered everywhere and are feeling very blessed.

This past year has taught us so much about what we have to be thankful for.  It doesn't have to be the big things, there are little things every day that so many people overlook.  A year ago we were struggling with the Croup and Madilyn couldn't even hold her head up.  This year we are healthy and she's giggling, chattering and motoring all over in her walker and on the floor.

Our community has shown us more love and support than we know what to do with.  It's overwhelming at times.  The financial gifts, the toys and clothes for Madilyn all mean more to us than my words could ever say.  My sisters who have taken time from work to travel with me and sit in emergency rooms, to celebrate the little things and sometimes to just listen to me and let me cry, without them I don't know where I'd be.

My husband for always loving and supporting every crazy idea I have and every rant I go on.  My children for being so tolerant and accepting all the changes that life has brought us in the past year.  My parents and in-laws even though they are far away for always checking in with us and helping in any way they can.

Madilyn's teams (all 8 of them) of nurses and doctor's that take incredible care of her and us.  They are always willing to go out of their way to help us in any way they can.  To the nurses and teams of doctors on W-11 at Children's Hospital for being so amazing during two scary hospital stays this past year..(we love you but hopefully won't see you this next year...)

I am also incredibly thankful for each and every one of you that takes the time to read this blog.  For the moment in time that you take to share in our lives and to learn about the things we live with every single day.

We are thankful for old friends and new and for our therapists that have become like family to us.

Most of all I am thankful that the sun is shining, the Peanugga is smiling and we have little pink shoes...it's all about the shoes..:)

HAPPY THANKSGIVING!!!

Amazing and heartbreaking all in one trip

We just got back from trip #10 to see the Milwaukee docs yesterday.  I went into this round of appointments with complete apprehension about meeting the Renal Specialist.  We found out last month that Madilyn has deformed kidneys with two collecting duct systems.  The good news is that even though they have the deformity they are functioning fine and since she has never had a UTI or unexplained fever they are not concerned at all.  They told us that they only need to see her if she has more than three UTI's in one year or multiple unexplained fevers.  They also told us that typically if the extra collecting duct system was going to cause a problem it would've already done so.  I am thankful that it hasn't and they say it probably never will.

Madilyn was seen by Radiology for the first changing of her g/j tube.  She did very well with this as she had not yet woken up from the anesthesia from her eye exam so she didn't even know they did it!

Now for the eyes...Madilyn has Retinopathy of Prematurity (ROP) which has caused complete retinal detachment in her left eye leaving her blind when she was around 3 months old.  She had laser surgery while still in the NICU to try and correct it but it failed.  The retina in her right eye started to detach so they placed a Scleral Buckle around it when she was 4 months old in hopes it would not detach further. This worked great at the time and when she was 11 months old they snipped the Scleral Buckle so her eye could grow normally and she's done amazing since then.  Until this appointment...she once again has a fluid pocket behind the right eye.  Her doctor was very upset about it as there is absolutely nothing he can do to remove it without further impairing her vision.  He said "at this very moment it is not threatening her vision" but there is the very real possibility that we could get up one morning to discover that she is completely blind.

We were set to see him every six months for the eye exams but with this setback we are back to every two months.  In January when he sees her again there is the possibility of placing another Scleral Buckle depending on what he finds.  In the meantime, we pray.  We pray that she keeps her sight.  We pray that if she doesn't keep her sight that it is painless (I have no idea what it feels like to have a retina detach and it terrifies me that it will hurt her).  We pray...for understanding...for patience....for the unknown as our life is full of the unknown.

The one thing I know for sure is that Madilyn is happy and absolutely thriving with or without vision and she loves her new fuzzy pink slippers..

Therapy progress and setbacks

So everyone knows our whole life is about three steps forward and one step back.  Madilyn has earned herself a two week break from one of her physical therapists because she has been so uncooperative.  This was very upsetting to me personally but it has also taught me a valuable lesson.  Everyone needs a break sometimes to breathe and reset.  With Madilyn we are constantly pushing and encouraging and using every moment we can as a teaching moment.  She has therapists/home visitors 3 days every week and 5 days every other week, this is not including medical appointments.  I think her outright rebellion was her way of telling us enough already.

I took the break reluctantly and even eased off at home and just let a few days be lazy (for lack of a better word).  If she didn't want to put the blocks in the bucket or play at the music table I didn't make her.  I didn't make her do "just one more" before letting her scoot around the floor like she loves, and I didn't try sticking food in her face praying she would finally eat something every time she turned around.  This was a very difficult thing for me to do, but it paid off!!

She has suddenly, after six months of trying and encouraging, decided to go forward in her walker and when she hangs on to our fingers and pulls herself to standing she has started taking a few steps!!!  I can also put her in her highchair and put food on the tray and she's starting to put it in her mouth.  She is actually taking bites all on her own of the cheese puffs!!  I'm so excited.....she just wants to do it herself, when she's ready.  She's asking to go bye-bye on days when we're home all day and talking more and more.  It absolutely melts my heart and makes me cry rivers of happy tears whenever our little Peanugga does something new.

That was the three steps forward............the nasty C-Diff infection is the one step backwards.  C-Diff is a highly contagious intestinal infection that was caused by the antibiotics Madilyn took at the beginning of October for a double ear infection.  It causes nasty diarrhea, gas, cramping and an in general unhappy baby.  It has made for some very long nights as that is when she gets her feeds (her main source of nutrition).  Her j-tube feeds go directly into her infected intestines.

We are extremely thankful that after just a few days on antibiotics we have seen a complete turnaround.  She is sleeping better which is making for much better days too.  We are very fortunate because C-Diff can be very difficult and can lead to dehydration, hospitalization, kidney failure and sometimes it can be deadly.

If I never had to hear "that could've killed her" again I'd be a very happy grandma, unfortunately for me I don't see any time in the next few years that I won't have to hear that.  Madilyn is getting stronger every day and some things aren't quite as scary as they used to be.  I do seem to have the bad habit of taking my moment of meltdown with each new infection or setback and then I brush myself off, take a deep breath, pick my positive thing to focus on and keep going....

Did you know? Our Dandy Walker Life

Did you know that 1 in 2500 babies are born with Dandy Walker?  Unfortunately 54% of these babies will become angels within the first 4 weeks of life and another 32% by 6 months.  There's estimated 1 person out of every 30,000 living with Dandy Walker.  There are 3 stages of Dandy Walker.....variant, malformation and syndrome.  Dandy Walker effects the brain......in Madilyn's case she has a very tiny deformed cerebellum which causes balance and gross motor issues.  She also has a VP shunt for hydrocephalus (fluid build up on the brain because her ventricles don't work properly) and a slight deformity on the back of her skull that is covered by her hair.  We keep hearing that "on paper" Madilyn should basically be the mentality of an infant, she shouldn't know anyone or anything or be able to do the things she does.  In reality she's motoring all over, learning to talk and is delayed but is happy and thriving.

We have feeding issues and most recently a kidney ultrasound showed us that Madilyn has deformed kidneys that contain 2 collecting duct systems rather than 1 and she has kidney stones but her blood work shows that they are functioning normally.  We are adding Renal to our list of specialists that we see (they will be #8) and will meet them for the first time during our November trip to Children's Hospital in Milwaukee.

There are no two people in the world with Dandy Walker that experience the same symptoms.  Some people live their entire lives never knowing they have it.........babies die from unknown causes because they were born seemingly healthy full term babies with never a suspicion that something was wrong.  Others spend years wondering why they have balance issues or other problems only to finally have an MRI done and the diagnosis of Dandy Walker to answer their questions.

Is Dandy Walker really an answer?  In my opinion it at least gives it a name, other than that it tells us nothing and nobody really knows anything about it......the brain is so complex and so many things can be rerouted that they have no way of telling us what to expect.  It can wreak havoc on the entire body, it causes problems with other organs, muscle tone and strength, vision, feeding, speech, development and no two people are alike.

Up until this point we have felt very very alone and frustrated in our Dandy Walker life as most people have never heard of it but recently thanks to the internet I have found a whole world of us.  I can read and reread a million times the medical sites and government statistics on Dandy Walker but absolutely nothing compares to reading another post or having a chat with another parent/person who is living it.  It gives us comparisons and inspires new ideas to push our children to progress and achieve new milestones.  Dandy Walker (or any other special needs parent) is forced to think outside the box on a daily basis, we are forced to become the McGuyver of medical contraptions to figure out what aids and benefits our children the most.  We live in a world where we have no comparisons.  Nobody can tell us when or if our child will ever reach milestones.  It can be incredibly frustrating and lonesome and at the same time tremendously rewarding.

Our little Madilyn Rose and Dandy Walker has taught us to never ever take anything for granted....each day you wake up and can open your eyes is a blessing, each milestone and smile is applauded, praised and cheered for.  Each new word and discovery for Madilyn is celebrated usually with happy tears and a bombardment of my facebook page because I want the whole world to know.  In the same token a cold is never just a cold......a setback is just another bump in the road and absolutely nothing is the end of the world...she has taught me patience, compassion and an entirely new level of unconditional love.  She has taught us to choose the positive every single day and that all the medical terminology and gadgets just make me smarter and the new specialists give me a chance to make new friends.

Though our life is full of struggles......financial and emotional......I absolutely love it....Madilyn is such a blessing in our lives and so are her new little pink shoes....

Defying the odds

So Madilyn and I recently went to Milwaukee for our first 4 day trip all by ourselves.  We had our first appointment with Endocrine to track her for possible growth hormone intervention.  The doctor and I mutually agreed that this is something that would be years away and will probably never happen.  With all of the other medical issues and procedures that she has already been through I don't feel at this point that subjecting her to daily injections just in the hopes of her being 5 feet instead of 4 foot 8 just isn't worth it. They also did a kidney ultrasound and lab work just because they are standard for Turner's Syndrome girls.

We then saw Special Needs Care Coordination, they are my lifeline, my sanity and my sounding board.  I would be lost without them and they love Madilyn.  They help with coordinating all of her appointments and equipment changes.  Our goal is to get everything coordinated so that maybe we will only have to go to Milwaukee once every 3 months next year instead of 11 times like this year............:)

Dr. Ruttum, the pediatric ophthalmologist was next.  He is thrilled with Madilyn's vision in her right eye and the glasses are doing their job so we'll see him again next year.

We back-tracked from Milwaukee to Green Bay one day to see the GI doc.......Dr. Gurram walked into the room and was talking and when he saw Madilyn he burst out laughing and said "oh my gosh, she's beautiful, I made her fat!!"  He couldn't get over how amazing she looked and how well she is doing.  The 3 pounds she gained in the first month after surgery is double what they anticipated so we have now cut back her feeds a little and are working on oral eating too.  The progress is slow but it's progress so we'll take it.

Our final appointment (the big one) is Neonatal development.  This appointment lasts up to 3 hours and Madilyn is fully evaluated by the nurse, the physical, occupational and speech therapists and then sees Dr. Baer.  This appointment is very frustrating for me because they ask questions like "do you think she actually knows who you are?"  This question hurts.  Of course they very quickly realize that she most definitely knows who I am and that she's capable of incredible things they never thought she'd do.  Dr. Baer informed me that according to all medical reasoning Madilyn should basically stay an infant, she should not be able to do any of the things she does much less be making even more progress.  She asked me if it was my goal in life to defy hundreds of years of medical research and history....this made me laugh.  I told her that was just bonus cause my only mission in life is to give Madilyn every chance possible at an incredible life.

I knew the moment she came out breathing on her own that she would defy everything.  My sister thought I was a lunatic because the medical facts spoke the complete opposite of my heart.  Madilyn is here to teach us all something and she proves that every single day.  At least three times in the past year we have heard that she should not be alive or that she should not have survived the illness she had, but she does and she's happy and healthy now and thriving in every way possible.

This very week one year ago was the absolute hardest week of my life......it was the week that I confronted my daughter's drug addiction head on and chose to go to court to take custody of Madilyn away from her parents.  I was adamant for a very long time that we would always be grandma and grandpa and we are but we also answer to momma and dada too...........September 14th is a day that we have chosen to turn into a celebration rather than a sad day.  We are going to celebrate Chosen Day every September 14th.  It is the day that we chose to put Madilyn first.  It is the day we chose to make a better life for her even though we knew it would rip other lives apart.  We did what we had to do and have not regretted it for a moment so now we choose to celebrate it.

I have hopes for this next year for much progress and healing for my heart and my family.  I hope to eventually begin the healing process and learn to communicate with my daughter again.  I hope for no life threatening ordeals and fewer trips to Milwaukee...........I am going to embrace the calm (and chaos) that is my life now and love every moment of it. 

answers...answers...answers...

So things have been crazy......we switched GI doctors in July and the new one if fabulous.  We absolutely love Dr. Gurram.  He let us try the formula change and it worked great momentarily.  We monitored her weight twice a week for a few weeks and had minimal luck.  The dreaded vomiting also came back with a vengeance. We have tried every thing we could think of to keep the food in her so she would gain weight and nothing worked.  So after much consultation and education we knew the switch from the G-tube to the G/J tube was coming.

On Friday, August 2nd Madilyn had not gained any weight again, she was maintaining at 14lbs 4ounces and I let them know when I called in her weight check that the vomiting was horrible.  We received the phone call later that afternoon that it was time to switch and they wanted us in Milwaukee asap.  Arrangements were made and Monday they called and told us to get there now and that she was a direct admit with surgery the following morning.  We were absolutely terrified.  The thought of being attached to a tube for up to 18 hours a day in order for her to get her much needed nutrition was very scary.

When we arrived at the hospital we discovered that she had dropped to under 14lbs.  This was heart breaking...we also discovered that her sugar level was only 42 and this was with normal feedings with excessive vomiting.  Her other blood levels were all off too.......poly-carbonates were low and so was her magnesium levels.  I was terrified, as sugar levels were a huge problem when the mystery virus struck us in early February. 

Surgery to do the EGD scope to check for damage from the vomiting or other problems went great and so did the tube change.  There is minimal damage that needs no medical intervention, it will repair itself and although the new tube was shocking to see, it is working wonderfully.  She has gained a pound in 6 days and within 24 hours the pink color came back to her cheeks and her eyes don't  have that sunken tired look anymore.  Within 36 hours after surgery we were thrilled cause her weight had jumped 8 ounces or so already but we were equally discouraged because the dreaded vomiting had not stopped.  The team of doctors decided to try a suction bag hooked up through the g-port on her tube and as soon as it was hooked up the vomiting vanished. 

The vomiting was strictly excess stomach juices she was producing because her stomach was so irritated.  At first she was attached to it 24hrs per day but we're already down to only when she's completing her feed in the morning and while she's awake feeding in the evening.  We have been able to progress her feeds enough that we already have 8 1/2 hours per day that we're not attached, by Sunday she'll be down to 14 hour feeds that leave us 10 hours every day of freedom.  The only thing she gets in this "freedom time" is her Pedialyte
feed to replace all of the protein and electrolytes she loses through the stomach juices.  Even that has reduced drastically.  The first few days the replacement feeds consumed 3 hours of our "free time" and today it's down to less than half of that and I do it while she's napping so it's not a big deal.

For how terrified we were of this change we laugh now because it's actually very freeing.  She gets plenty of floor/jumparoo and exersaucer time when she's not attached to anything and we work on our sitting therapies and figured out how to attach the pump bag to the walker when she is attached.  We also get to go out for walks every day as it is very easy now when we are not rushing in between feeds and vomiting.  We actually got to stop and visit with friends the other evening on our walk and didn't have to worry about rushing.  It's been amazing.

As for the answers, when we were admitted and they did her labs they started an IV in the middle of the night, running it at an extremely low rate.  Dr. Gurram came in bright and early on Tuesday and explained that he knew what the "mystery virus" was from February and that we were definitely correct in saying that it almost killed her.  It's very rare and it's called Refeeding Syndrome.  When Madilyn had the chronic diarrhea for 6 weeks in Dec/January it ended up making her malnourished (nobody ever said this to us then).  The diarrhea stopped the same day we switched to Pediasure and she became extremely sick immediately after that with the massive vomiting and fever which landed us airlifted to Milwaukee.  A person can become malnourished within 4 days of being ill and the body depletes all of its stored resources that keep sugar levels, magnesium etc somewhat level, when complete nutrition is suddenly introduced the body sometimes doesn't know what to do with it and it goes haywire and can start shutting systems down.  It can cause cardiac arrest, respiratory distress and organ failure.  Dr. Gurram told us repeatedly how lucky we are that Madilyn survived.  All of the feeding problems multiplied after that and I blamed the Pediasure, in reality it is because her GI tract partially shut down in order for the rest of her body to heal and thrive.  Dr. Gurram is very hopeful that with the J-tube and proper nourishment her GI tract will heal and begin to function normally again.  It will take time and there are no guarantees but we are hopeful.  Refeeding Syndrome is something that Madilyn will always be at risk for since she has already had it once but it's ok because it has a name, we can educate ourselves and her doctors are aware of it now so it can be dealt with properly.

So at this moment we are thankful and blessed.  Progress can be made, Madilyn can heal and we can work towards progress with the oral feeding since there is no more vomiting.  All in all.............it comes down to we can either focus on the negatives: trips multiplying with the new tube, financial stresses and rare syndromes or we focus on the positives: answers, progress, living, laughing and love........We choose the positive!

Life changes..........

Sorry I haven't been on in a while, we've been struggling.  First the good news.....Early On (our birth to 3 program) came and did Madilyn's 6 month evaluation on her IFSP goals and I am very proud to say that she has already passed all of her 6 month and 1 year goals.  She is already passed the goals they set for mid-January 2014 for sitting, speech and fine motor skills which puts me over the moon.  New goals have been written and we are working towards them now!!!

Now for the rest of it.......as everyone knows feedings have been our biggest struggle ever.  The puking, oh the dreaded puking has caused so many problems, frustrations and tears.  We have a new GI doctor that we are pleased with, his communication skills are great and he's easy to talk to.  I feel like he really listens to me and he is very thorough with his explanations.  We switched at the end of last month to a higher calorie formula mix from Pediasure and while it has made a big difference, it's not enough.  The puking is back with a vengeance.  The puking makes the back of Madilyn's tongue raw and irritated and she digs at it and won't eat.  I can't even begin to imagine what it has done to her stomach and esophagus.  The end of May she weighed 14lbs and it's almost August and she's only 14lbs 1.5 ounces.  At one point we were up to 14lbs 4.5 ounces.......I made a promise to God, myself and Madilyn that I would always do what was best for her and the time has come.  We are looking into (per the recommendation of 2 GI doctor's and the Special Needs Care Coordination Clinic) switching from a G-tube to a G/J tube.  The G-tube we currently use feeds directly into her stomach while the J-tube part of it feeds directly into her intestines.  The Care Coordination Clinic is helping us to work out a schedule so we will still use her stomach (G-tube) at times during the day otherwise the setbacks are way to expansive to even begin talking about.  The J-tube feeds will be longer but she will gain weight faster (we hope) and it will give her the reprieve she needs from the constant puking, it will allow things to heal and hopefully we will be able to make real progress with the oral feedings and get her taking more food.

They will be doing an EGD scope at the same time to look at the potential damage all of the puking has done and to see if there is something wrong that can be easily corrected.  It has the potential to answer all of our questions or absolutely none of them.  Sometimes children with neurological problems like Madilyn just have disconnections between the brain and parts of the body and there is no explanation at all as to why things don't work properly.  Either way it can't be put off any longer.  She has only gained 2 pounds in 6 months and while she is thriving in every other way and stretching we run the risk of undoing all of that without proper weight gain.  We can get way more formula into her than the Pediasure but we are at a point that it's not physically possible to up her feeds any more as she cannot tolerate them and her calorie consumption cannot keep up with her increasing activity levels.

It will change the challenges that we face daily........instead of figuring out how to keep her upright and somewhat immobile so her feeds stay in we'll have to figure out how to chase her around and play in her toys with a 3 foot feeding tube attached to her.  We'll deal more often with the pump/tube than packing like we're running away from home with multiple outfit changes, extra carseat/stroller padding for all of the potential puke.

This has not been an easy decision and tons of tears have been shed and a stress migraine has been brewing for 2 days.  We run the risk that she may never be able to come off of the J-tube feeds.  We also run the risk that we may do this and other than a break from the puking to let things heal it might not make any difference with her weight gain.  With Madilyn's chromosome abnormality there's no comparison so we have no idea how big she's supposed to be or how big she'll get, but at least by trying we will know.

She will be hospitalized for a few days while they figure out the new feed rates and tolerance levels and it will mean even more trips to Milwaukee as the tube will need to be switched every 3 months and this one I cannot change myself.  It brings with it more stresses about money as I will have to miss quite a bit of time from work for this transition and it's an unexpected several day trip to Milwaukee with another one coming up the first week of September.

I have always said that everything happens for a reason and that I will never not trust my gut instincts so even though I don't know and may never know the reasons I am going to trust my gut that this is the best thing for Madilyn...............and I will pray

Pediasure warning and changes!!!

After several months of feeding/vomiting frustrations, we have finally made some big changes.  First, a warning to mom's with babies/toddlers...DO NOT GIVE THEM PEDIASURE.  Our nightmare started on Tuesday February 5th which is the day Madilyn started Pediasure per her GI doctor.  Wednesday February 6th, she awoke with a fever and massive vomiting. By Thursday we were admitted at out local hospital for fever, vomiting, dehydration and very erratic sugar levels. They (the doctors) didn't want them any lower than 60 and Madilyn's kept dropping down to 38/40 and they had no idea why.  On Friday morning Life Flight was sent from Milwaukee Children's Hospital to get us.  This was the absolute scariest time of my life.  I was terrified for the first time ever that we may lose Madilyn and not know why.

We have never been able to get Madilyn back up to larger bolus feeds during the day and projectile vomiting has been a daily struggle for months.  The GI doctor's only solution was pediasure and a G/J tube that would go directly into her intestines and bypass her stomach all together.  This would be life changing for her, as odds are against her ever getting it removed.  I have fought this from day 1 insisting that we just needed a dietary change.  The GI doc is adamant that she will not do that so we have found a new GI doc that we will start seeing in July.  Since then my husband and I have scoured the internet for any source of information we can in regards to Pediasure.  We have discovered from a UK website that it should never be given to a child under 22 pounds and that the mystery virus that made Madilyn so ill was probably a reaction to it.  Her little 12 lb body had no idea how to breakdown the amount of sugar and protein in the Pediasure.

I have since worked with a local dietitian and her pediatrician and have put Madilyn on Enfamil at a 27 calorie mix.  She is doing amazing!!!  The vomiting is gone. The gagging is gone. The mucus and coughing fits that happened almost a dozen times per day are gone and so are the hiccups she was getting 10 times per day.  Her tongue is healing and she let me feed her baby food for the first time in months.  She can tolerate larger feeds already and has no diarrhea or other adverse effects.  We have to monitor closely to ensure that her calorie intake supports her activity levels but that's ok, we've always had to do that.

We feel very hopeful for the first time in months that we can finally make progress in the feeding area now.  It's the only area that we have been behind and I'm trying not to beat myself up too much for not being more forceful with her original GI doctor.  I am thankful that we didn't resort to either the G/J tube surgery or the Nissen Fundoplication for the GERD causing food aversion.  The reflux is part of her life but with time we will know if it's really as bad as suspected for if it was the Pediasure multiplying it.  I believe it was the Pediasure.........

Lesson learned again, it's one I learn repeatedly, always always trust your gut.  Nobody knows your child better than you, even if they had MD behind their name..........

Progress & Frustrations

So we went Milwaukee and had 6 appointments in 3 days......they all went great!!!  Genetics was absolutely thrilled to see her and how she's growing and progressing.  We received a very thorough explanation of her complex X-chromosome abnormality and better understanding..........or at least as much understanding as possible with what comes along with being a "one and only".  She is the only person in the world ever to have her chromosome lines so we will continue to pray that she continues to be as amazing as she already is.  They don't need to see her again for 2 years!!!!!!  Next was the gastric emptying scan for GI as the pediatrician says it's GERD and the GI doc was insistent that it was a digestion problem.  The scan took 90 minutes and she was not allowed to eat anything for 8 hours prior.  I thought for sure it was a recipe for vomiting with not eating that long prior but the Peanugga must have known how important the test was and completely cooperated and took a nice long nap instead.  The test came back the following morning with normal results!!  That equates to grandma = 1 and the GI doc = zero!!!  We then proceeded to the GI nurse visit for a button change where grandpa got to watch for the first time and I got to change it myself.  I was trained to do this in February by general surgery but this time I actually got to do it.  Grandpa was completely grossed out but I thought it was pretty cool.  Next stop was the Special Needs Care Coordination Clinic where a physician assistant, Doctor and Nurse all evaluated Madilyn and spent almost 2 hours talking to us about what our goals are with Madilyn and the best way to reach those goals.  They will help with all of the frustrations with the GI doctor also.  Friday, the final day of appointments started bright and early with a visit to Neurosurgery for an office visit to check her shunt and they were happy also with the progress she has made and the shunt in doing it's job nicely so unless a problem arises they don't need to see her for another year.  Last was day surgery with Dr. Han for her retina check.  They put her under anesthesia for this as the exam can be painful and upsetting.  She did awesome as always and Dr. Han was thrilled that everything looks great.  The eye exams under anesthesia will now go from 4 months to 5 and if that one looks good it will go to every 6 months and stay that way until she is old enough to tolerate the exam in the office.

All in all in was a hectic but great trip and we even managed to spend an entire afternoon at the zoo where we discovered that the fish are Madilyn's favorite.  When grandpa was petting the sting rays she was squealing and if I would've given her the chance I think she would've jumped in the pool with them.

Madilyn has been making awesome progress with sitting and with the new reflux meds tummy time is no longer the issue that it was which makes us all very happy.  She is making up to twenty minutes at a time on the tummy wedge reaching for her toys, playing with the light board and looking all over.  It feels like huge strides after all the struggles.  She is even able to roll onto her tummy and gets up on her knees and uses 1 arm.....as soon as she gets the other arm to cooperate we'll all be in trouble cause little miss busy will be crawling in no time.

Feeding/speech therapy is progressing too.  We are finally to a point that we can get her to put stuff in her mouth again and she is starting to talk more and more.  She even told some other children at therapy "bye" when we were leaving last week which absolutely thrilled the therapist and grandma.

My only current frustration is the GI doctor, which we are in the process of switching with the help of the Special Needs team.  She has gone from everything being fabulous and wanting us to space out home nurse visits/weight checks to insisting Madilyn needs a G/J tube.  Mind you, the rate that Madilyn is growing has not changed and the puking has decreased.  The GI doctor has never acknowledged Madilyn's reflux so the pediatrician did and bypassed the GI doc with the referral to pediatric surgery.  We are thinking that the GI doc ended up with a wounded ego from this and is now being extremely uncooperative.  On top of that I argued relentlessly that it was not a digestion problem and she insisted it was which the scan they did proved I was right and not her, hence, wounding her ego even more.  I have had multiple other nurses from her own department as well as physician's tell me that there are multiple other options to try and control the reflux and increase weight gain and the Dr just tells me no.  She is learning the hard way that "No" is not an acceptable answer for me.  So now with the help of the Special Needs team we will switch doctors and hopefully end up with one that feels Madilyn is worth their time and effort.

For better understanding where our frustration comes from the G/J tube goes directly into the intestines and completely bypasses use of the stomach.  Madilyn would be attached to a feeding pump 16-20 hours per day.  This would cause great problems with physical therapy, mobility and progression.  It was explained to me by nurses in the GI department that they did not understand why this was the only option being given because typically a child needs to be regressing and losing weight and only after multiple dietary changes and all other options are exhausted is a G/J tube inserted because they rarely ever come out.  Well, Madilyn is doing none of the above, she is thriving and growing and doing fabulous so we will switch doctors and save us all some stress.

Now if the weather would just warm up so we could go camping all would be right with the world....;)

and we sing..............

So the past few weeks with the GERD diagnosis have proven very frustrating.  Madilyn's primary pediatrician diagnosed the GERD and prescribed an addition reflux medication for it.  In the meantime the GI doctor finally stepped in and stated that they think it's a digestion problem, not GERD.  I asked them how they figure it's digestion when the problem is keeping it in?  No response.........UGH!!  They have ordered a gastric emptying test while we are in Milwaukee in two weeks and ordered her to be on erythromyacin (yes, it's an antibiotic) to aid in digestion and added 100% corn oil to her feeds for added fat.  I did the oil for a week with no weight gain, questioned why they were adding the oil rather than figuring out how to keep the feeds in?  They're response was to up the oil from 2 ml per feed to 4.  UGH......at the same time we had started the antibiotic and rather than aiding in digestion the combination of the two made the puking (which was already horrible) absolutely violent.  It was the most horrific thing I have ever witnessed.  So I, of course, stopped the antibiotic and the oil and called the GI nurse... yelling at them as I feel they are not listening to me at all, and maybe if I yell and scream out of pure frustration they may listen.  Their response, the doctor calls Friday night while I'm at work and tells my husband that we need to get Madilyn to Milwaukee to get her switched from a g-tube to a j-tube.  NOT HAPPENING!! A J-tube means it goes straight into her intestines and she's on a 24-hour continuous pump feed and all the progress we've made is undone because she's constantly attached to a feeding pump and her stomach is not being used at all...........UGH!!  I called Monday to update them that the Prilosec we started on Saturday is actually working and is cutting the puking in half after only two day...........no response............they call Tuesday (today) while Home Nursing is here and I happily get to tell them that while trusting my gut instincts Madilyn has gained 1 1/2 ounces in 3 days!!!  WOOHOO!!!  13 lbs 11 ounces and her first gain in 4 weeks!!!!!!!!!!!!!  They proceed to tell me that it's fine to not give the antibiotic or oil until we see what the scan shows at the end of the month but to be prepared for the j-tube eventually.  I politely informed the nurse that until they try other dietary changes or ways to soothe the GERD there will be no J-tube and if they are willing to do it then set up the referral to another doctor that will listen to me.  I'm not an idiot, there are tons of other options........I just feel like she's taking the easiest/quickest way out for her which means huge huge setback for us and I won't allow that to happen. Madilyn has come way to far to start doing things that will potentially set us in the wrong direction.  I will continue to trust my gut and advocate from the rooftops for Madilyn so she gets the absolute best life possible.

In the meantime we go about our life tracking every little spit-up and being very thankful for the little bit of relief the new med is giving and educate ourselves on another new medical condition we have a lot to learn about.  I have second guessed myself for not trusting my gut in the past and I will not do that again.  I know Madilyn better than anyone and if I feel someone isn't listening to me, even if it is her doctor, then I will find someone who will.  

When all else fails and we are beyond frustrated we breathe, deeply and we sing........because even with all the setbacks and the frustration those happy little smiles and kisses make every day worthwhile and give us tons to sing about....:)

A day in our life

I've been struggling the past few days with a public post by someone close to me that bashed me for them needing to find things out on Facebook.  I want to share completely what a day in our life is like. 

Yesterday started relatively normal....Madilyn was a little fussy because she was having troubles pooping because of dietary changes due to her recent diagnosis of GERD.  Home Nursing came to visit and I expressed my concerns and added the recommended teaspoon of dark molasses to her first feeding.  I no sooner finished the feeding and she started vomiting.  Massive massive vomiting.......coming out of her nose, needing to be suctioned and it wouldn't stop...........it finally calmed and it was time to feed again........this time as I'm tubing her it's coming out of her nose and she is still unable to poop.  I contact the coworker I had promised to work for two hours earlier and let her know that I once again am unreliable because Madilyn's health changes so quickly, contact my husband who has to race out of work to come get us to bring us to the emergency room because I cannot put Madilyn in the backseat by herself with all of the vomiting for fear she'll choke to death or aspirate it into her lungs.  I contact my sisters so one can make sure my daughter is taken care of after school and the other (on her birthday) comes and spends hours in the emergency room to calm me and in case there is anything she can do.  Her ER visit lasted 5 hours and consisted of a CT scan because we always always have to check the shunt, abdominal x-rays to check her intestinal blockage and a chest x-ray that ends up showing something viral.  Blood draws from the lab which show elevated white counts which lead to urine sample collection and an enema for my poor miserable Madilyn who is doing nothing but sleep.  She also spiked a fever during our ER visit.  After 5 hours and much consultation she was given an antibiotic shot, instructions to go home and do a pedialite overnight feed and call the doctor's office at 8:30 am to find out what time we need to be there today for a follow-up.

In between all of this I also dealt with the GI doctor's office trying to figure out feeds that she can tolerate because they were not happy with the dietary changes.  Mind you, this is after reporting to them weekly about the vomiting for 4 full months and it was her primary pediatrician who diagnosed the GERD, not them.  I am still impatiently waiting for the call from Milwaukee Pediatric Surgery to find out when we have to be there for a Nissen Fundoplication procedure to help fix the GERD.  This entire time I am cuddling Madilyn and covered in vomit, waiting for answers that never come and praying I can keep it together while I'm in public, praying that she will bounce back as quickly as things they went bad.

The highlight of my evening was watching Madilyn peacefully sleep on the couch next to me while actually keeping down the pedialite feed she had once we got home and my nephew shows up with crab stuffed mushrooms leftover from my sister's birthday dinner out..............my husband promptly puts them heating as he knows this simple little gift is huge for me today. 

I spent quite a bit of time in the middle of the night watching my husband and children sleep.......watching them so peaceful while I worry about how quickly Madilyn's health changes and where the money will come from to pay for unexpected trips and every day bills.  It's during the night that the things I try to let go of because I can't control them sometimes take over my thoughts and make sleeping very elusive.  I don't know or feel like I ever really sleep anymore, it's always with one ear open in case she throws up...........it's during this time that I am most thankful.  I am thankful for the loved ones closet to me that are always there anytime of any day, I am thankful for my wonderful husband and children that are there to pull me out of my own head and to love me for the total control freak that I am..........and I am thankful for the beautiful baby who is the center of our world.  I am thankful for the kisses I get to wake up to every single day and the fact that she finally says Nana and Papa. 

I have spent months trying to make the people I think should be most involved in Madilyn's life be there and have finally come to the realization that I can't do that.  It is driving me crazy but I have to let it go.  I am thankful for the random friend or acquaintance that has left gifts for Madilyn and donated clothes, rocking chairs, exersaucers and random, unexpected financial gifts that mean the world to us, without them I'm not sure where we'd be, but that's okay too.  I am a firm believer in everything happens for a reason and even though sometimes I question it.............I will patiently wait.......and enjoy every moment that I can.

Sunshine and Smiles with Grandpa

Grandma is working, so I (grandpa) hi-jacked her blog today.... :o)

Today I get to hang out with a beautiful little princess that we have the privilege to call our granddaughter. I sit here and I watch...watch this little girl in absolute amazement. I watch her playing, I watch her sleeping... I just watch. There is not a second that goes by that I am not completely fascinated by her.
When she smiles, she smiles with her whole face....it's a look of total happiness. Her smile is contagious. You can't  help but smile yourself when you look at her. She just glows. I don't know how else to explain it. Each smile wraps me a little tighter around her precious little fingers.

I know Kathy has talked about how Madilyn is here to teach us something, and I believe she is right. Despite her struggles and her ups and downs, she still smiles.

Maybe it's because I'm a little older now than I was when my own children were little, but I can honestly say that little Miss Madilyn has definitely taught me a few things. She has taught me patience, more than I ever imagined. I have always been pretty patient and low-key, but she has shown me that everything happens when the time is right. It may not be when you want it to happen, but it will...hang in there. (She has her grandmother's stubborn side..) She has taught me love.. love to a whole new depth. She is such an amazing little girl. A fighter who is determined to take on the whole world and to leave her mark on everyone who meets her. She has also taught me that anything is possible...never give up.

I watch Kathy with her too... a lot... Now there is an amazing woman. She works tirelessly with Madilyn, taking her to every therapist appointment... constantly working with her on her own type of physical therapy in a way that combines playtime with hard work. She pushes herself and Madilyn to take the next step and never questions it. She doesn't look for notoriety or praise for doing it, yet she has my utmost respect for her perseverance and determination. Unbelievable.... I am extremely lucky to have both of them in my life.
Well.... I think I've babbled on enough for right now...Miss Madilyn and I are going for a walk to enjoy this beautiful day. In parting, I ask you to take a deep breath, look around.... and know... just know... that life is good...

New Toys & changes

Peanugga has a new toy........she now has an exersaucer that she absolutely loves!!!  It's the first toy we've had for her that has not needed to be modified so she can fit in it properly.  It is helping to build leg strength cause she loves to jump up and down now and it's amazing for her toy interaction.  She is soooooo fascinated by the toys on it.  There's mirrors and spinning toys and lots for her to chew on.  We are very grateful to the friend who brought it to us.  Thank you.....

So she's back to gaining weight too.  She was 13lbs 7.5 ounces last week and we're hoping for more this week.  The GI doctor was very happy with her gaining about 2 ounces every 10 days or so.  Hopefully we'll be on a steady gain for a while now. 

The feeding/speech therapist brought up some questions for us to ask the doctor at Madilyn's 18month check-up the end of this month.  The roof of Madilyn's mouth appears to be an incomplete closed cleft palate.  It is really high with a narrow higher section in the middle.  The therapist thinks this may be some of the problems with the feeding.  She thinks it makes it difficult for her to suck and that it's extremely sensitive to temperature changes.  So we'll start with the pediatrician and go from there with those questions and see what we come up with.

We are also attempting to use a bottle again.  Milwaukee told us in February that we could stop fighting to get her to use the bottle, at the time we thought that was awesome news, however, getting her to use a cup is proving to be quite challenging so we are trying a bottle and several types of cups to see what works.  Even if it is the bottle she chooses at least she's taking liquids by mouth  through something other than a spoon.  Our theory is "whatever works", 10 ml by bottle is better than nothing but the tube so we'll try it.  Most of the things we do are trial and error and tons of persistence.   The feeding therapist has us trying things a minimum of 10 times before we are able to say that Madilyn doesn't like it, sometimes even longer.......it has taught me patience, patience, patience.........

Reality checks & baby shoes

So we're up and running again....computer problems should be all fixed now so I can go back to regular posts.

We have been making great progress with the sitting but not so much with the tummy time.  She has discovered that if she locks her arms on the lady bug we can't get her on her tummy without great struggles.  It can prove to be quite frustrating and comical at the same time.  She locks her little arms so tight and hangs on for dear life while cranking her head around to yell at me at the top of her lungs to express her dislike of tummy time.  When we do manage to get her on it she pouts, she is the master of the pout to attempt to get her way.

We spent yesterday in Green Bay for a visit to the GI doctor.  We got to meet with the dietician to discuss her feedings and caloric intake so when we do need to up the feeds again we can figure out what works best.  They are very pleased with how sick she's been since January with the amount of weight she is gaining again and the doctor didn't hesitate to tell us that with all the puking issues that she was afraid of how Madilyn would look.  She was thrilled at her activity level and appearance, as well as the progress we have made with the speech/feeding therapist.  Our next trip to visit her will be in the middle of June.  Sounds to me like they want to see her every about every two months.  She also said we could space out Home Nursing to every two weeks if I was comfortable with that, but I am not......that day will come but I'm not ready yet so we'll leave it weekly until the weather gets nicer.  Home Nursing has been an awesome resource for me with any question or concerns that I have.  They can help with feeding suggestions, tube problems or any other concerns that arise and besides that we love our nurse, she's like family now.

When we were leaving the doctor's office yesterday we had quite the reality check of just how far we've come in a little over six months when the nurse stated how awesome Madilyn looked and how amazing she is doing.  She didn't hesitate to tell us that she remembered the first time we brought Madilyn to them in the end of September 2012 and that they did not think that Madilyn would survive at that point in time.  She's beautiful, healthy and thriving now, they no longer have that fear and are making long term goals and plans to keep her growing and to make sure her caloric intake can keep up with all of her activity now.  It makes me breathe so much easier knowing that.  It's also a reminder of just how fragile Madilyn's life really is.  There's really no words to explain how it makes me feel. 

I knew when my daughter left town that I had no other option but to go to court and gain custody of Madilyn.  I knew for months that there were huge problems and she wasn't doing well.  It's a reality check to hear others talk about her appearance then and looking back at pictures makes me realize that we saw what we chose.  My first eye opener was about a month after we had Madilyn with us and a friend saw her and said "oh look at her, she's not grey anymore, she's healthy looking and pink".  We've had repeated reminders when she had the croup in November and her doctor told us that had that happened even a month prior she would not have survived.  We even made it through the dreaded virus.  When Life Flight came to get us from Portage to take us to Children's Hospital in Milwaukee the experience was life changing.  When they took her on the stretcher through the halls of our local hospital there were lines of employees with their heads down wishing us a safe flight and the looks on their faces were so sad.  All I could think as I was walking and crying was "they look at us like she's never coming back, dead man walking was what came to mind", people don't understand that Madilyn not making it has never been a thought that I have entertained, and I don't think she has either.  It was a reminder when we had our first appointment when we came back and the nurses told us about how upset the doctor was and that he didn't think she's survive.  Now when we go and they see her they are so excited. 

I always tell my husband that the hardest part about raising Madilyn is not all the work, it's not work to us, it's love, 100% unconditional love, the rewards we receive when she smiles and kisses are HUGE.  The hardest part is raising a famous baby.  It's wonderful all the lives that Madilyn has touched and all the people who genuinely care about her and follow her progress and I am adjusting (and probably always will be) to the fact that we can't go anywhere without someone wanting to see her, talk to her or touch her.  We have people that are complete strangers to us approach and ask "Is that Madilyn?"  I'm sure that will never change, even in Green Bay and Milwaukee when we're in the malls people comment.  Most people actually think she's really advanced because of her size and the things she's doing while in the stroller or I'm carrying her and then they ask how old she is.........makes me giggle because I've actually had people argue with me that there's no way possible that she's that small at her age.   I'm sure that will only increase when she's actually talking and running around and itty bitty still.  We're learning to accept the fact that people will always stare and comment.  The glasses stir lots of comments, and if we had a nickel for every time someone tells us how cute she is we'd never have a financial care in the world.

To put it all in perspective, the highlight of my trip was discovering that Peanugga finally can wear size 1 shoes.  She has her first shoes, cute little pink tennis shoes and little pink dress shoes.  In the middle of all the life changing things we are learning, the medical education we receive daily, the progress that we fight so hard for............it's sometimes the tiniest simple thing that completely makes our day............like little pink tennis shoes.

Computer troubles

I haven't forgotten anyone, we're just having another computer issue and this is not very convenient to do from a phone.

So peanugga is doing good.  She's been struggling with a cold all week so every time she coughs she pukes which leads to weight loss instead of gains.  She was 13lbs 3 ounces on Friday ..this makes me sad, hopefully this week will be a good move in the right direction.

Peanugga is mobile now too..grandpa modified the height adjustment on her walker so her feet touch the floor so now she can cruise around.  She has already figured out how to go backwards! !!

The new cord for the computer has been ordered so hopefully it will come in just a few days and I can do a real post....

Happy Easter!!!

We're back!!!  The Peanugga is doing great.....busy weekend last week we went to Medford, WI to watch auntie Shyanne's first gymnastics competition, it was fun.  Of course, after a 4 hour car ride there Madilyn only made it a 1/2 hour before I had to bring her and grandpa to the hotel so she could chill.  When the Peanugga decides she's had enough, she definitely turns into the boss.

Monica (physical therapist) was thrilled at the progress she has made with tolerating tummy time and the sitting while she's playing.  When the BHK home visitor came this week she brought us the "lady bug" that Monica recommended.  It's a lady bug that Madilyn goes on her tummy on and it swivels on top of a playmat with toys to occupy her.  She actually does okay on it.  The only way we can get her on her tummy is if she's not right on the floor and she has to have something to amuse her or she's not staying there.  If she's right on the floor she also just flips herself onto her back so it defeats the purpose.  She needs to do the tummy time and use her arms so we can eventually get her crawling.  Someday it will happen, hopefully within the next 6 months or so.  It would be awesome to have her sitting and crawling by the time she turns 2.

Feedings are progressing too.  Liz (the feeding/speech therapist) has us doing spoon feeds at the same time we are tube feeding her so she learns to associate the food going into her mouth with the tummy getting full.  She explained to us that the reflexive action of eating is learned in the first few weeks of life and when they don't get that it needs to become a learned behavior.  So we learn, very patiently.  The GI doc upped Madilyn's feed amounts last week after having a 2 ounce weight loss and this past week she only gained an ounce.  She's 13lbs 5ounces now and the GI doc said if she doesn't have substantial gain this coming week they will up them again.  This worries me because she pukes.........it's not quite as bad as I expected but it's still puke......the weight gain and progress is slow and frustrating......it takes tons of patience and positive thinking our part as well as diligence in tracking, feeding times and monitoring everything.  She's growing though and getting more active every day and we have an appointment with the GI doctor in DePere, WI on Friday the 12th.  I am hoping that she's pleased with our progress.

The few days of sunshine and nice temps were great for us.  We managed to get out for a couple of walks and Madilyn absolutely loves her stroller rides, for that I am very thankful.  It now landed her with a cold but hopefully it'll pass quickly.  On one of our walks we went to the grocery store and I was very thankful for the plastic weather cover on the stroller, everyone wants to touch Madilyn, this bothers me.  I understand that everyone loves her and follows her progress I just wish they wouldn't touch her.  I wish that everyone could understand the health risks with a baby like Madilyn, she gets sick so easily and then it sets everything back.  Therapy progress and feedings go ten steps in reverse when she's sick so getting out publicly is difficult when everyone wants to touch her.  Come say hi and ask about her but please don't touch or get right in her face.  Germs that people carry that don't bother them can make Madilyn very sick very quickly.  I joked with my husband that we need to figure out a fan system for inside the weather cover so in July she can still be out in her protective little bubble without roasting....lol

Happy Easter to everyone today!!  Easter is about counting our blessings and being together.  We are definitely counting our blessings!!

Eating...eating...eating

Peanugga's weight dropped this week...13lbs 4 ounces...2 ounce loss..........this makes me sad.  The Home Nurse said it was because last week she was here right after Madilyn's morning feed and that leads to an inaccurate weight gain so from now on she's coming before she gets fed in the morning.  Weight loss calls to the GI doctor also lead to increased feed amounts.  She now up to 100ml (3.38 ounces) 4 times per day.  That's an increase of an entire day feed since she was at 80ml 4 times per day.  That also means potentially huge weight gain next week...........and puking...lots of puking until she can tolerate them.

We went to feeding/speech therapy today and this was the first time Liz actually saw Madilyn eat and "play" with her food.  She was very excited because Madilyn doesn't hesitate to put her hands in her food or to get her face dirty trying to get it in her mouth.  Liz want us to be giving Madilyn table foods every time she gets her tube (bolis) feed during the day.  She says it will help her associate the food going into her mouth making her tummy full.....so we get messy four times a day starting now.  This could be lots of fun!!

The hubby and I took Madilyn to watch Auntie Shyanne's basketball game today, she was very excited.  She used to shut down right away in noisy environments but since the glasses she is completely in awe of everything going on.  It was cute cause when someone made a basket and everyone cheered Madilyn gets excited too.  It's nice to see such huge progress in areas like this, it's days like today that help me to realize just how far we've come in the past 6 months.

We have a big day tomorrow, the BHK home visitor is coming with the Early On therapists so they can coordinate what they work on with Madilyn and grandpa is going to be here to see what they all do with her.
Hopefully a good nap after therapy and then it's off to another basketball game and Saturday morning we leave for Shyanne's gymnastics meet in Wisconsin.  That means pool time for the kids Saturday night and hopefully a little relaxing after several busy days.  I won't post again until after we're home on Sunday so I hope everyone has a great weekend and that the weather gets a little warmer so we can take the stroller out.

New Vision = New Fears

So we are making big progress with sitting that came along with the glasses and new vision for Madilyn but along with the progress comes the expected few steps backwards also.  We have recently found that when we take her glasses off she clings desperately to us.  When I am bringing her up to bed at night or downstairs in the morning I have to hold her very tightly with both arms and she just clings to me.  Clings to the point of if I take one arm off to carry my coffee etc. she will try to climb up the front of me crying and hanging on for dear life.  It makes me happy and sad at the same time that her glasses have made such a difference.  Happy because the progress is great and it's obvious how much of the world they have opened up for her yet sad when I can hear the fear in her cries when it's something as simple as carrying her without them.

Tummy time has also become even more of a challenge than it already was.  She absolutely hates being on her tummy.  The new therapist has us working with a wedge with a musical light up toy to get her to spend some time on her tummy and we are progressing with that.  We were able to have her on the wedge on the bed with music on my cell phone and she didn't freak out this morning.  She also has us holding her on our chest and leaning back on the couch or wedge and this makes Madilyn use her arms to push off of us when we go too far back.  This also eases her fears cause she is in our arms.  It's a constant constant work in progress and I finally feel like we are at a point that one step forward does not equal two steps back.  We take ten steps forward and only one or two back.  This is awesome...

Over the weekend I ran into some people (several actually) while working that ask about Madilyn and tell me what saints my husband and I are for everything we do with/for Madilyn.  We do not view it this way at all, she is our blood, she is our life and she is our love.....I could not love her more if I had given birth to her myself.  The bond I have had with Madilyn from the very first moment I saw her is unexplainable.....it's like I have special heartstrings made just for her by god and she definitely knows how to pull them.

The other thing I receive lots of comments about is being so happy and positive all the time even with all the medical trips and therapy.  Being happy and positive is a conscious choice I make every single day, it's hard not to be positive when I get to wake up to the happy, smiling, cooing little girl that brightens our days.  Therapy and medical trips are part of our life and always will be, it's easier to accept them then it is to be upset or dreading them.  It is what it is so we might as well make the best of it...........and make the best of it we do especially when Madilyn gets so excited when she makes progress and we cheer her on...she gets so proud of herself, it's awesome!!!

Physical Therapy Progress!!!

We had our first "work" session with the new physical therapist today and grandpa got to come with us because it was after work.  It was awesome!!!  Madilyn played with the baby in the giant mirror and even gave her kisses, it was so cute to watch.  She spent some time on the big swing with Monica and then got to play on it with me.  While on the swing it works on her muscles used for sitting.  I sat her on her butt in front of me with toys and went back and forth and side to side while barely holding her at her hips so she straightens herself out.  She did great!!  We then tried to move her on her belly over my leg but she's not receptive at all to tummy time so she then went on grandpa's chest on the big wedge where she feels a little safer and we can gradually work our way to laying flat.  The swing was really fun...I told the hubby I want one to play on at home, to bad it would have to replace our couch..

Milwaukee's goal for Madilyn is to have her sitting for a few seconds unaided by the September 6th appointment, I told Monica today that my goal for that was June.  She thought it was reasonable and said "then let's get working".  This made my day as sometimes our goals seem pretty lofty and unrealistic but if we don't shoot for the moon who will?

Madilyn has been making really quick progress with sitting on the couch unaided and we were able to play with the light board for almost 20 minutes last night with only repositioning her a few times.  The way I feel when I watch her accomplishing these tasks is absolutely overwhelming and beyond words.  It is so exciting, like nothing I have ever experienced in my life. 

Home Nursing came today for her weight check too and said they were expecting a plateau after the huge gains she's had the past few weeks but no plateau for the Peanugga........she gained 5 1/2 ounces so she's 13 pounds 6 ounces now!!!!  Hopefully the plateau won't come until we're over 14 pounds, I want to jump this hurdle as quickly as possible and with the new tricks we're using from Liz (speech/feeding therapist) I don't think that's unrealistic.

All in all today was an awesome day........can't wait to work with the therapist again on Monday.

Sitting & and eating

 

She's sitting!!!!!  Months of hard work are paying off and she's sitting!!  WOOHOO!!  Only for about 20 seconds and then she doesn't even fall over......she has discovered she can use her feet and scoot forward on her butt and end up on her back......I'm very excited that she's sitting and she's very excited that she already figured out how to wiggle her way out of it.......either way it's progress.

Madilyn also had her evaluation with the speech/feeding therapist today and we're nowhere near as behind as we originally thought.  She gave us a bunch of ideas to help move the gag reflex back and simpler foods for learning to eat.  I always started my older kids with cheerios and the therapist actually told us to use fruit loops.  Fruit loops dissolve much quicker so there is no chance of a child choking on them.  We also went to the Co-op in Hancock and purchased dried papaya and mango strips, she said they work awesome for teething and getting them to explore with food.  I can put them right in the playpen or with her toys and she'll put them in her mouth and lick them just like her toys and there's no mess.  The other trick we learned was Red Vines licorice..........she told us to take a few pieces out and let them get stale then Madilyn can teethe/chew on them and not get any chunks off that will risk choking but she is getting all the texture and flavor.  We learned some new games with the eating too so it gets Madilyn to open her mouth easier and we tried them at dinner tonight and it was amazing.............first meal ever that she did not gag and throw up twice before keeping any food down!!!!!!!!!  I absolutely love all the things I learn from her therapists, quite a few of them (especially the eating ones) I wish I knew when my children were smaller.

Tomorrow we have the BHK home visitor and then Friday we have PT with Monica (the new therapist) and Home Nursing for the weekly weight check.  I'm going to check with the ones who work with her to see if they mind if I post some pictures of them working with Madilyn............fingers crossed that we'll have pictures posted soon and another awesome weight gain this week. 

Cribs and CPR

Sorry I haven't posted in a few days.  We had a crazy busy weekend between me working and family stuff going on.  Saturday I worked and then took the Peanugga to spend some time with dad before he went back to college and Sunday I worked and then Peanugga went to Auntie Tammy's (my sister's) for a visit while we accomplished major tasks around the house.  We had to move all three bedrooms so that my hubby, the peanugga and I are now in the biggest bedroom so she gets to sleep in her crib every night now instead of the playpen.  She loves it!!!  I did have to use bumper pads on the back of it even though they tell you not to because the Peanugga decided that the crib bars made awesome teething toys and kept sticking her arm through it and couldn't get out......It was amusing but I quickly realized there would be no sleeping so it's covered.  The Peanugga was not happy about me covering it either, when I was trying to tie it she was playing in the crib and kept pulling it off and yelling at me.  Mission accomplished though, it's covered and she sleeps great.

Today we had a friend's 2 year old, Bentley, here for the morning while Mommy was working and Madilyn loved it.  Bentley absolutely loves her and it's nice to have another little one around.  I'm hoping it motivates her now that she can see so much better and she'll want to mimic him...  Her progress already since getting the glasses is huge....she sees everything now and it's fun to watch her.  When she's on the floor she is starting to go after her toys now and has turned into a scooter which makes the therapists cringe.  She tucks her arms behind her back, gets her little butt off the floor and uses her legs to push herself around.  I think it's funny, the therapists don't.  Although the new therapist said we would find a way to work with it but it's not conducive to crawling, but neither is refusing to do tummy time either.  When we try to put Madilyn on her tummy she puts her arms out, locks up her legs, cranks her head around to look at you and has the hugest temper tantrum ever.........she gets downright angry and as soon as you let go of her she flips herself over and lets you know how unhappy she is with you.  It usually ends with her spitting at me and pouting.  She sure is stubborn.

I went tonight and got my CPR certification.  I haven't taken a CPR course in over 20 years so it was nice to go especially now that Madilyn is eating more foods, it makes me feel a little safer.  I highly recommend to everyone to take a CPR course, you never know when you could save someones life.  I questioned the woman teaching the course about what to do if Madilyn was choking because a child (infant) her size gets tipped head down and we cannot do that with Madilyn because of the shunt.  She told me to try it with her more level but if that didn't work then she would have to be tipped and hopefully it works quickly or it can cause problems with her shunt.  There were some local daycare providers at the class renewing their certifications and when we started talking about Madilyn they thanked me for not attempting to put a child like her into daycare and putting that responsibility on them.........I reassured them that it has never been nor will it ever be an option for us as she requires too much care.

The sitting is going really well.  Peanugga no longer fights it as much as she did now that she can see so much more.  She will actually sit with us for extended periods of time.  She loves her little music/light up piano and the light up bongo drums......I'm telling you all that my cutie little pistol is going to be a rock star someday with how much she loves music.....

Holy Therapists....

So you will never again hear me complain about not getting out of the house or lack of adult conversation.  Madilyn already has a physical therapist that comes to our house every other Friday to work with her, and a Visual Impairment Specialist that comes into our home and a home visitor from BHK that works with her weekly and Home Nursing comes weekly for weight checks which get called in to her GI doctor, and now it's time to add more therapists.

Madilyn's regular therapist and the VI were here early this afternoon and then we went to a new therapist to be evaluated.  She loved Madilyn and will be working with her once per week at her center and we are adding speech/feeding therapy once per week at the same center.  Once Madilyn makes some more progress than another therapist at the hospital will be added for Occupational therapy.  The speech/feeding therapist told me to "plan on getting messy"...haha....as long as it gets the Peanugga to not be so texture sensitive and taking things better orally we'll get messy...

We got lucky with the speech/feeding therapist because other than her evaluation next week will have the same day/time appointment every week.  It's not working out quite that easily with the new PT, hopefully in time it'll be a permanent appointment and not quite so much juggling.  I'm not looking forward to all the running but I am extremely excited about the additional therapy and can't wait to see the progress the Peanugga makes now and in the months/years to come.

Her glasses are already making a huge difference with the sitting time and the toy interaction.  It used to be a huge challenge to get her to sit at all and now she'll sit for several minutes at a time with some help.  Next step is to get her sitting on her own......they say for seconds 6 months from now....I say for minutes by then, we'll see who wins that one...

We also became Nana and Papa for speech therapy purposes rather than grandma/grandpa.  She does occasionally say grandpa but the natural speech progression suggests Nana and Papa first.....so Nana and Papa it is.

We have a very busy weekend coming up..I work both mornings and then Saturday afternoon I am taking her to visit with her dad again before he heads back to college.  We also have continual therapy to do, it's ok cause most of it's just fun and when it isn't, we sing..........quite horribly, but we sing.

Peanugga's new glasses!!!

So my sweet Peanugga had an awesome day.......her new glasses came in and it's awesome to see her in them.  They obviously opened up her range of vision and she can't stop watching absolutely everything and smiling.......oh the smiling, it just melts my heart to watch it.  It's absolutely amazing.

She also turned 17 months old today and finally broke the 13lb barrier.  When Home Nursing came to do her weight today she was 13lbs 1/2 ounce!!!!  WOOHOO!!!!  Lots of cause for celebration in our house today.  She has her BHK home visitor coming tomorrow and we meet with the new physical therapist and her regular therapist on Friday.  Very busy week for us but I cannot wait to see how much the glasses help her progress. 

Big excitement on the feeding front too....her night feeds are completely back to normal and she kept down two 80ml feeds this afternoon!!  It's been well over a month since we've been able to keep down an 80ml feed.  It opens up a ton of time for therapy/play when we get to do feedings every 3 hours instead of every hour.  She also ate two teaspoons full of mixed fruit yesterday......she used to eat that in an entire day and yesterday we did it in one sitting...and we bought her some teething cookies and graduates goodies for the booster seat therapy in hopes that she will get them to her mouth like she does her toys and eat them.  I'm really hopeful that once she realizes she can feed herself the eating may really take off.

The bedtime thing is working out awesome too....by 9:30 she lets you know it's bedtime and we're all really liking the new routine.  It's all baby steps but it's all progress and any progress is celebrated in our house.  Madilyn has taught me to really step back and enjoy the small things in life.  Nothing is insignificant to me anymore......every smile, every giggle, wiggle or mimicked noise is cause to celebrate.  If she can be as happy as she is all the time then I think everyone should be.

Bed time changes & visiting

So this grandma got very brave last night and made bedtime changes.  Madilyn normally sleeps on the couch in her boppy pillow for about 2 hours before we head up to bed.  I have tons of paranoia about putting her upstairs even with the monitor.  Well last night I got brave and put her in her bed shortly after 9 and used the monitor.  This is a huge step for me.  Of course everything was just fine and she slept like a little angel and I took the time to just relax and hang out with my hubby and of course not take my eyes off the video monitor so I could see every little move she made.  Progress.......it's all progress.

We are hoping for a call that the glasses are in......they said up to 2 weeks and Thursday will be 2 weeks.  I am very excited and anxious to see the changes that the glasses will make for Madilyn.  I want her world to be as open as possible. 

We made it about 15 minutes yesterday sitting in her booster seat playing with the cheerios.  Her hand/eye coordination is improving really quick.  The therapist told us she thought it would take 6 months or more before she attempted to put the cheerio in her mouth by herself and she did it yesterday.  She put it to her mouth, licked it and gave me the biggest smile ever.  HOORAY for frosted little treats!!!!  She also loves sitting and playing with her new little lights/sounds piano so I ordered the Fisher Price bongo drums that the BHK Home visitor brought on Thursday.  I swear Madilyn is going to be a drummer in a rock band when she grows up......she gets so excited when she can pound on something it's very comical to watch and brings me great joy.

For the first time in well over a month we are going visiting this afternoon.  Madilyn's dad is home from college and we are heading over to his grandmother's house so they can spend some time with her.  She loves her other grandma and gg (great grandparents) so I am sure she will be excited to visit.  She used to go there for regular visits but the dreaded virus really set us back with feedings, coughing and sniffling.  We are finally on the tail end of it and her feedings are almost back to normal now so it's time to let her spend time with the other side of her family too.  With Madilyn being so tiny I am extremely cautious about what I expose her to.  She gets sick very easily and it takes a very long time to overcome the setbacks that being sick causes.  It messes up feedings and therapy and can take away the five steps we've made forward and turn it into ten steps backwards in the blink of an eye.  While we need to protect her as much as possible we can't live in a bubble either and sometimes it's very difficult to figure out the balance........it's a constant work in progress with a million variables to consider.

The Peanugga princess just woke from her morning nap so we are going to take a bath now (she loves her baths) and get our therapy time done so we can enjoy our visit this afternoon........and hopefully next time I post I'll have pictures of her in new glasses.....

Noisy sleepers & glasses

So we had a busy day yesterday running errands and the Peanugga Princess and I got to have a much needed lunch date with my hubby.  The princess got a new lights/music piano that teaches all kinds of stuff including Spanish.......a little more inspiration for her to sit on her butt and play with it......it sounds better than my singing (even though I secretly think she prefers my horrible singing..:).  Once we got home it was off to work I went and time for grandpa/Madilyn time.  I think they both really look forward to this, especially Madilyn because grandpa sings way better than me and he plays guitar for her.

We were in bed last night and Madilyn is sleeping and I obviously was trying to but she is soooooo LOUD...she's contentedly sleeping and all of a sudden she'll let out the biggest yell and then obnoxious farts and a few minutes later it's a repeat yell and then a burp...puts me into an absolute fit of giggles to which I find it even funnier because my hubby and the Peanugga are both sound asleep.  I'm absolutely amazed at how much atrocious noise can come out of such a precious little being.  Then she'll just let out a big sigh of relief and go back to sleep....... and I'm wide awake........giggling......

We have our fingers crossed that early this week the phone call will come that Madilyn's glasses are in.  I'm so impatient....it's only been a little over a week and I feel like we've been waiting forever for them.  I can't wait to see the changes when she is able to see more than a few inches from her face......it will open up a whole new world for her to experience.

I guess I should explain the nickname too.......Madilyn was too big to be a pea and to little to be a nugget when she was born so I came up with Peanugga.  My other children felt the need to explain to me that Peanugga isn't even a word but I explained right back that it's not a word.....she's a very real person and she's my Peanugga...:)  Speaking of Peanugga's I worked all morning and she's been napping and the sun is out and beautiful and she's waking up now so we're heading out to enjoy some sunshine....

My peanugga

Yay for Good Days and News!!!

Yesterday was crazy busy between the monthly doctor visit for Peanugga's Synagis (RSV prevention) shot, parent/teacher conferences for the older kids and gymnastics practice for Shyanne (my 11 year old).  Madilyn does really well with the Synagis shots and thankfully they are only 5 months out of the year.  Parent/teacher conferences went really well which makes me happy to know that our older children are doing well in school even with all the changes in our house in the past 6 months.

Today I was very happy that I didn't have to leave the house.......it's the little things like this that mean the world to me sometimes.  Home Nursing came to visit this morning and Madilyn is up to 12lbs 13ounces!!!  WOOHOO!!!  Every ounce gained is a struggle so to see her gain 11 1/2 ounces in two weeks is HUGE and makes us incredibly happy.  I'm praying she hurdles the big 13 next week.  I was also able to coordinate 3 Milwaukee check-ups into 1 trip in the end of May.  We'll be there for 3 or 4 days but at least it's only one trip.  While we are there we will get Madilyn's annual genetics and neurology check-ups and then the eye exam under anesthesia to track her retina's.  We also got the call today about additional physical therapy being added so in addition to the one that comes to our house every other week we'll be going to weekly appointments near our local hospital.  I will find out next Friday at our first appointment with her if the new therapist is also the one that will help with the feeding issues..............fingers crossed that it is.

Madilyn showed off for the home visitor from BHK that came today.  Normally she won't sit on her butt unless I am singing but today the worker brought lights and sounds bongo drums and Peanugga actually sat on her behind on the floor with only slight help from me and played the drums for several minutes.  This is HUGE progress for us.  I can actually see now that she will sit on her own hopefully in the not to distant future....all the struggles and horrible singing are starting to pay off.  There is nothing better than hearing how thrilled the home visitors/therapists/doctors are with the progress we are making.

Feedings went really well last night/today too.  Only two spit-ups which is a big accomplishment after the past several weeks.  We are up to 60ml feedings every 2 1/4 hours.  It's nice because it leaves a lot more therapy/play time when the feedings aren't so close together.  All in all today was an extremely good day......and we love good days.

Drugs and other dirty laundry

So I had a friend question me yesterday about how we ended up with custody of Madilyn and if we knew why she is the way she is.  I realized at that moment that I need to "air the dirty laundry" in order for this blog to serve the purpose I want............my daughter and her husband were having serious marital issues that come along with being young and not completely grasping the whole picture when it came to Madilyn's care.  I won't speak of the father out of respect to him and his family but I will spill the tale of my daughter.  When we obtained full custody of Madilyn and I started interacting with her doctor's they all had the same question, "what drugs was the mother using while she was pregnant?"  I was shocked and horrified by this because the mommy in me wanted so desperately to believe that my child would never do this............what I wanted to believe and my reality are world's apart.  My daughter has since admitted to smoking pot and taking caffeine pills during the pregnancy.  What we believed was a genetic incompatibility between mom and dad may not be so.  We will live our lives wondering is it truly just a genetic incompatibility? Is it the drugs? or is it pure fluke of nature?  Did the dandy walker cause the chromosome abnormality or vice versa?  The doctor's in Milwaukee tell us there is no way to ever have answers to these questions but knowing the type of drugs used is vital in setting the therapy and intervention path.  It was my daughter's issues with drug abuse that led to us having Madilyn in our care. I tried everything I could to get help for her and that is not the path she has chosen....I know she loves her daughter but I also know she is not capable of doing what is best for her right now.  I pray a lot now, I never used to.........I pray that Madilyn has a happy, healthy life and that my daughter will someday deal with her demons and that the drugs will be part of her past.......I pray that I will someday have a real relationship with her again....I miss her every day and love her with all my heart..flaws and all she is my child.

This is not the path I would've chosen for myself at this point in my life but I believe it is the path I was meant to be on.  Madilyn is an absolute blessing in our lives and I believe every child deserves every chance possible to be the absolute happiest they can possibly be and if by sharing our story I can stop one person from using drugs or help another parent/grandparent learn the value of patience/compassion then it is all worth it.  I am learning through all of this to not be quite so harsh/judgmental............I pray that people don't judge my daughter.......they are her demons and choices to live with, not ours.  Some people may wonder why I chose to put this out there for the whole world to see.....I believe that everything happens for a reason and that Madilyn is here to teach us all something.  I also was raised to believe that if you do something, own it, if you said something, admit it.........basically own your actions or else they will come back to bite you in the butt.  We live in way to small of an area to attempt to keep "secrets" like this and keeping the truth a secret does not benefit anyone at all........so I chose to put it out there for the whole world in hopes that one less baby is born from a pregnancy complicated by drugs......that one less person will give us the odd looks when we are tube feeding Madilyn in Walmart.

I used to look at babies like Madilyn and think "oh, those poor people".........now I look and think "oh, how sweet".  The lives we see at Children's Hospital in Milwaukee make us very very thankful for what we have because it could be 1,000 times worse.  When we are there we talk with other parents about specialist offices like most of you talk about grocery stores.  I am medically very knowledgeable now...I even impress myself sometimes with all the things I have learned.  I am trained to change a g-tube (mic-key) button, check to make sure a shunt is functioning properly and can program any feeding pump you toss my way.  After raising 3 children of my own I finally know how to properly install/fit a carseat (a little late I know...) I am the master of medications, side affects and nebulizer breathing treatments.  Most importantly through all of this I can finally say that I truly know the meaning of unconditional love.......I always believed I already knew what that meant...........now I know I do......