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....