Therapy, Therapy, and more Therapy

I am happy to report that since my last post, um like 5 months ago, we have not been in the hospital!!! But you may be wondering what we have been doing other than working 2 full time jobs and trying to keep up with an extremely active 4 year old and manage Hadley's daily routine, well it's Therapy. At least that is what I feel like I am doing. Luckily Hadley loves therapy and does not seem to be bothered by the constant in flow of new people making her do various things. So since Hadley was 10 weeks old we started Physical Therapy with Babies Can't Wait, the early intervention program in Ga. We were assigned a therapist that I love. She has alot of experience and has been so helpful throughout everything. Once Hadley started to heal from her decompression it was very obvious that we needed to pick up the pace a bit. It so happened we had very good friends with very good connections at a Therapy Center. They specialize in Hippotherapy, (horse therapy), but it is a bit too soon for Hadley to jump on a horse so for the time being we stick with the occupational and physical therapy in their center. From the start we noticed her getting stronger and I felt really good about the way things were going. With BCW the parents are hands on and work side by side with the therapist throughout the session which has it's advantages, first being that it is done in your home using your toys and things you have so this helps you when you are by yourself and wanting to work on the things you did during therapy. The Therapy at the center is done in therapy rooms. At first I was there to participate but once Hadley got used to the therapist I stayed out. I do like to be able to see the progress she is making but I also realized that Hadley needs to be pushed. When I'm there Hadley knows that she can cry and I will pick her up to hold her. Why not. But now we have the best of both worlds. The drive is a little lengthy to the therapy place and I have had to recruit my Mother in Law to help with one of the days because it is just too much. Now that brings us to her 4th therapy that was added....

Pretty much before Hadley had her decompression her neck was so weak she could hardly hold it up therefore we did not push the food with her. I had tried some puree's but I was so worried that she was going to get choked I really held back. Once she started healing I began with the purees again. First thing that happened was Hadley refused the spoon. Would not even budge on that.I mean we would make her laugh and then sneak it in there. She would get mad and as a result I felt like she was beginning to resent food. I started with finger foods then and mainly the puffs. She really liked those and I felt like we were making progress. But once we progressed with some other small bits of food Hadley started gagging and would ultimately throw up. That happened several times and after that she decided that instead of trying to swallow she would just chew the food and spit it out. So I brought this up with the therapist and they all decided that it would be good to start working with a speech therapist. Before setting that up we had to get a swallow study done at Children's. Which is basically a moving xray taken while something is being swallowed so you can determine if it is being swallowed correctly. I had brought about 5 or 6 things that we offered her and I would attempt to feed her while they took xrays. Luckily we only had to get 1-2 bites down of anything because I knew she would not handle anymore. So the results were that she does totally fine on thin liquids (formula) but the thicker liquids and food is almost going down the wrong way, but she does catch it, hence the gagging and throwing up. From the results of that we were referred to the feeding team at the hospital. That was set up much like the way the swallow study was done but it was a much longer eval. She also thinks Hadley's Hypotonia, low muscle tone, is playing into effect with her tongue control. There are a ton of small muscles in the tongue that need to work to push the food to the sides of your mouth in order to chew and then swallow. With Hadley everything just goes back to the back unless she hold onto it and then spits it out. The good thing is Hadley really enjoys food. So while we are debating on how to get her to eat it I just keep giving it to her to at least chew and spit out. So finally we could begin the therapy and we meet with her weekly as well. She has been helpful in giving us ideas on what to try. One is smoothies, luckily Hadley loves them and will tolerate sipping them out a cup that you hold. She protest at first but gets used to the idea. That is her daily breakfast and I am overjoyed at that. I mean I really want to stop the formula but until we can get some nutrition in her I don't feel comfortable doing it. She also recommended giving her strips of things that she can hold on too and guide them in her mouth while she chews without losing control. The best think we have found for that are those puffs, yes Cheetos. And can you imagine, she loves them! So at least we have the nutritious smoothies to start the day right. But you can try and rack your brain of soft strips of food, yet sturdy enough to hold.....there aren't many folks.

So in a nutshell we are doing therapy 4 times a week and it gets pretty hectic. Luckily I have some support with my Mother-in-Law and the woman that keeps her also lets the therapist come to her house to work as well. So we will continue to hopefully make progress1

Not all surgeries and no fun...

I realized I have not posted any good times yet. Hadley has managed to have some fun in all these medical issues. She actually has been to quite a few places and made some friends. I also have not introduced her amazing Big Sister, Rylee, who is 4 now.

Hadley loves Rylee. So far Rylee is the only one that can get Hadley to have that full on belly laugh. She smiles a whole bunch but Rylee can crack her up. It is very sweet.  

This was sometime after her first two surgeries and we were finally home and enjoying every minute of it!  

She goes to pool parties and meets new friends, Ansley and her are only 3 weeks apart. But sadly, she lives in Charleston.  But that means we get to visit, often!

Hadley also goes to the beach! It was pretty windy that day so she was in her bouncy seat, with a towel, in a tent, under a big tent. She loved every minute of it as you can see. Good sleeping weather.

She also loves porch rocking!

She even gets dressed up to go to the lake!

Yeah it's a little bright on the water.

This is what happens when big sister has fun. She said she was giving her a halloween costume. I'll say! But she did end up with a "normal" costume. My little pumpkin!

Look at the big girl in her sisters chair! Also teething, hand have been in her mouth from Labor Day until now. 8 teeth and counting!

Rylee and Hadley

 This was the Spina Bifida Association of Georgia Walk and Roll fundraiser. We had sweet friends and family come and and walk with us. It was a fun day.

Of course Santa surrounded her with gifts. She was a little overwhelmed but her big sister saved the day and help unwrap all her gifts.

 And last but not least, one of my favorites. Hadley was a little star-struck by Santa. But she did not cry throughout her sisters long list of wishes. It was like she was frozen. LOL!

What a difference two weeks makes!

It is been 2 weeks post recovery and we are doing good! She is pretty much back to her happy, smiley self. Last week was pretty rough, I'm not going to lie. On top of the surgery she woke up last Tuesday completely stopped up with a cold and started running a fever late in the day so I rushed her to the pediatrician and it turns out another UTI as well. But she got antibiotics for that and then her staples out on Thursday so that really helped with  her being so uncomfortable. This past weekend we just relaxed. Much needed! We went out and did some shopping, really just to get out of the house, but also to feel somewhat normal again. It is really important to us to do things as a family again after everything has been so out of routine, especially for my 4 year old, Rylee. She does really well with it, who wouldn't with round the clock grandmothers giving her attention, plus my husband and I take her individually for some special time. In fact I'm pretty sure there was not a day last week or the previous week where she did not convince someone she really needed an ice cream or a treat on the way home from school! Oh yeah she knows how to work it!  But Hadley also started sleeping much better over the weekend so that meant we all got more rest. So this week we are back at daycare and back to work full time so we are getting back into our routine whether we like it or not! I have posted a pic of her scar that is healing very nicely. It needed to be done since I grossed you out with the previous one! Not bad at all.

From here we have to really ramp up the physical therapy. We need to get her back to where we started and then try and progress more. She still seems to be sore but it does seem to be less each day. She would scream when we picked her up this time last week but now just a little grunt and maybe a whimper. We have Physical Therapy this Thursday so we will make a plan of attack and get her moving again!

And We're Home!

Yes, we made it home today, about two hours ago and Hadley is so happy. She is napping now and I will probably do the same even though we had a great night last night we are still very worn out. The hospital stay was some what eventful. We stayed in ICU the first night and next day and during that time we had some really bad storms come through and the hospital went on lockdown with tornado warnings twice. So that was fun. Luckily nothing happened because we were told that because in the ICU they do not evacuate. They basically moved Hadley's crib away from the window as far as they could, put some blankets on the sides of the crib and gave us a flashlight and told us not to leave. The night before had been a pretty painful one for her so needless to say my nerves were shot at this point so we just went with it. Late that afternoon the commotion had died down and we were given the OK to head down to the Neuro floor in a regular room. In a way it's kind-of like getting downgraded from first class to coach but the big advantage to the regular rooms is that they have their own bathrooms! So that meant I could take a shower finally! ICU bathrooms are located outside of the ICU entrance and are for all families so I just decided to hold out for one in our room. The second night proved to be just as exciting as the first. Remember when I was saying Hadley's appetite was amazing. Yeah it all came back up at about 3am. So that meant the nurse and I had to clean and move a screaming child that did not want to be moved and wasn't supposed to be moved. And not to mention the pain medication was in all that mess that came back up, that is really what started it all. So once again we had another sleepless night but we plowed on and things got better the following day. One thing that was funny to me about Hadley was she really hated the nurses. I know that should not be funny but it was because you can start to see her little personality coming through. One nurse was talking to me and put her hand on Hadley and Hadley reached and picked her hand up and took it off of her. The nurse was shocked and we were laughing so hard. I don't think Hadley really hated the nurses but she just associated anyone coming in the room with temperature taking, medicine giving, and more poking. Even when the Grandparents were there at different times she gave them attitude right at first. She is such a sweet and gentle baby but I'm glad to see she is getting a little independent streak.

I know this next part will be gross to some so don't read further if you get queasy but I will post a picture of the incision site and really just so you see exactly where it is an how big. To be honest Sean and I both were expecting it to be bigger. But this will heal just like her others. And pretty soon she will have longer hair and it will cover it up regardless. So here is the pic...

She is still pretty sore today but the Dr. said the swelling lasts for about 4 days and so we should be on the tail end of that so things should just get better from here. But we still will be taking it easy this weekend and next week. I am going to keep her out of daycare next week also just because I really can't handle her getting a cold or something worse on top of this. Lets just keep her sister well also!

Decompression Surgery

This was taken this morning right before she went into surgery. It feels like three days ago! It has been a stressful day, to say the least, but she is doing good so far. The surgery was longer than the others, so that was probably what was stressing us out the most. On one hand, I know Hadley is only 9 months old and won't remember any of this, which is comforting, but on the other it just hurts not to be able to explain it to her. The other hard part is not being able to hold her. She has to lay flat for 3 days I believe..? I think this is the most crucial part of the surgery. It's very important not to move her, so that she and the graph heal like they are supposed to. The problem is,  you just want to hold and comfort her. Luckily the motrin and tylenol is helping to ease the pain. One very positive thing is the incredible amounts of formula she is consuming! I think the nurses are amazed at how much she has put down after having such a big surgery. They tried to just giver her clear liquids for awhile but she was not hearing that!

We are in the ICU for the night and should move to a regular room tomorrow. I will say, staying in the ICU has it's perks. The nurses are changing all her diapers....I could get used to this! She is now sleeping and I think I will too. Hopefully we can get through the night without too much discomfort. Thanks for all the lovely prayers and messages sent our way today. We are truly blessed.  

Hadley and her Boo-Boo's

I have obviously been watching too much Doc McStuffins! (the big ole book of boo boos!Thanks to Disney Jr. 24/7) I thought it would be good to give a rundown of her diagnosis's to date so you can see how we got to the decompression. Hadley was born with Myelomeningocele Spina Bifida. SB has 3 different types, occulta, meningocele, and myelomeningocele. Myelo being the worst case, where the spinal cord and nerves are actually exposed through the opening. Her opening was at the S3-S5, or sacral. That is basically the lowest you can get which typically you have a great outcome with that. But the funny thing about Spina Bifida is you truly do not know what you are going to get or why. It's a whole bunch of wait and see and it is often refered to as the snowflake defect because no two cases are alike. You are constantly learning, at least this first year that has been the case with us. Along with SB she was born with Hydrocephalus (water on the brain), which is very common with SB, I think about 85% of the cases to turn into severe cases requiring a shunt. Alot of times when the closure surgery is performed, within 24 hours of birth, the hydrocephelus will change. Most surgeons like to wait and see because you do have that chance of it getting better. Hadley's shunt was placed when she was 19 days old. Hers was more of a gradual increase but it did get to the point of needing a shunt. She has also had 2 revisions to date. And they were back to back but we are going on 7 months of no issues so we are very grateful for that. Right around the time of the revisions she also had hip dysplacia. She wore a harness for a little over 6 weeks.

I know it looks painful but in true Hadley fashion it did not bother her in the slightest. And it was worth it because follow up xrays have shown that her hips are staying in place. After her harness was removed she was really set back though. She was braced in that position so she was not having to work at all. We ramped up the physical therapy at that point. Which we were seeing progress but very slow progress. Also during this time we started seeing a Ophthalmologist for her eyes, they were remaining crossed. She was diagnosed with Strabismus in both eyes and we started scheduling that surgery. Which we did have at the very first of this year and as far as surgeries go (and we have had our fair share) that one was fairly easy and quick. I think we arrived at 7am and were home at 11am same day! The cover picture was taken before her surgery and I haven't really gotten a great picture after yet. (If you know me you would know I am not skilled in photography) Obviously that was done by a professional and I just love it. So back to the boo-boo's we are pretty much up to the syrnix. I said before she was just not progressing if at all in some areas you would think she would be by now. Mainly her head control, she is still pretty wobbly and cannot maintain her head upright for long periods. Her right side is noticably weaker than the left also. When we saw the neurosurgeon in early December he was concerned and scheduled the MRI. Which brings us to today and the decompression surgery.

The beginning

So, here we go...I am so not a writer, but Sean and I thought this would be a good way to keep everyone in the loop with Hadley's progress. We have also found great benefit and comfort in many other blogs we have discovered dealing with Spina Bifida. You can read all the articles and definitions, but reading about someone else's personal experiences has helped a great deal.

I will briefly start at the beginning to catch everyone up to speed. We were in our "gender" ultrasound (19 weeks) where the ultrasound tech told us we were having a girl! (our 2nd!) and then got oddly quiet and took a ton of pictures of the brain and then told us we should go to the waiting room. And we waited for a long time. Next thing we knew we were in back in the ultrasound room and in walks a Dr. who we have never met and says he needs to double check on some things. He performs the ultrasound again and tells us our baby has a birth defect called Spina Bifida. Oh and by the way she also has Chiari Malformation II. We need to do an amnio and I can do it right now or you guys go have lunch and think it over and call me. Yeah, that was not a good day. Needless to say the amnio was performed and he was right on the money on all accounts.

Fast forward to April 23rd. Hadley's Birthday! It was a very stressful day to say the least. The plan was that she would be delivered via c-section and then would be taken to NICU to check her out and within the hour be transported to Children's Hospital to their NICU where the neurosurgeon would do his eval and then schedule the closure surgery. Thankfully everything went according to plan. But still very stressful and very emotional. Both my girls were delivered c-section so at least I had experience with that. With Hadley it seemed there were about 20 more people in the room she was taken and they had to cover the opening along with giving her oxygen.

They brought her over to me but she was on her belly and I was not even close. But I did see her! They left and Sean went with and I was taken to recovery. By myself. Yes, that is my pity party. If I could ever offer advice on anyone preparing for this it would be to insist that someone else be allowed back to the recovery room besides the husband. Here I was by myself, just had a baby, and Sean was with the baby and I was just laying there. Luckily Sean and Hadley were brought down to me before they left for Childrens.

So Hadley and Sean went to Children's and they determined that her closure surgery would be at 7am the next morning. It was about 3 or 4 pm at this point. Sean spent the night taking family back and forth to Hadley and me. I was so thankful we were right across the street.

Hadley's surgery was the next day and they also let me "out" for a few very painful hours to go across the street to see her.

This was just after the surgery and she did really good in the NICU.

This was the first day I got to actually hold her, on a pillow. She was 3 days old.

We were there for a total of 9 days. No shunt when we left but her head was borderline the whole time.

Her first Wagon ride! 9 days old!

She had her shunt placed a little over a week later and then we were able to be home and enjoy the newborn stage. If you know us you know our first child, Rylee did not sleep a wink and at 4 now it is still questionable. Hadley on the other hand was sleeping through the night at 8 weeks. I was actually keeping her up because that is what I was used to and suddenly I realized she wants to sleep. So pretty much from 8 weeks bedtime is a firm 7pm and wake up is 6-7ish. I cannot complain!

Syrnix Discovery

So we found out through a MRI that Hadley has a fairly large Syrnix. It is actually called Syringomyelia...yeah I cannot pronounce it either. I think I will stick with Syrnix, much easier. Anyway, it is a fluid filled cyst in the spinal cord. If I was tech savy enough to put her MRI pictures up it might help but since I'm not the syrnix begins at her shoulders and runs down just below her chest in the spinal cord. How does this happen? Well Hadley has Chiari Malformation II and this is something that is very common with Myleo SB babies. It is basically the downard decent of the brain tonsils (my word, not the scientific one :)) and this can block the flow of cerebrospinal fluid and in Hadley's case create a large syrnix. The syrnix cannot be removed but the goal is to reduce the size of it and this is done through a chiari decompression surgery. It sounds scary and it pretty much is to us. To Neuro folks who see it daily, probably not so much. So I will try and explain the decompression surgery which is going to be taking place very soon. They go in and remove part of the vertebrae to relieve pressure. Then they have to create a graph to cover the opened bottom part of the brain. Our neurosurgeon literally drew this entire procedure out on the paper that covers the exam table! I wish I would have taken that with me, even though I would have not been able to figure it out now. He was very good at calming us down and we trust him completely as this with be his 4th surgery on our daughter (closure, shunt, shunt revision, and now decompression) who by the way will be 9 months old this week! We are hoping to see some positive things from this surgery, as all surgeries, but in Hadley's case she is very weak, diagnosed Hypotonia, and he thinks this is contributing to alot of those issues, especially in the upper torso area.

More to come in the next few days as we prepare for this surgery.