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....