SB Clinic

Yesterday was Kaitlyn's check up at the Spina Bifida clinic and thankfully everything went well. She was champ through all her tests and the results were great. We met her new neurosurgeon and he was nice, so that was a relief. Overall they think she's doing awesome and progressing well. We do not return until around April of next year. :) One very happy mama here. :)

Anxiety

I have a lot of anxiety about Kaitlyn's 6 month check up tomorrow. Last year in Oct, we found out she was losing some sensation during her urodynamics test.  Neuro thought it could be due to her spinal cord retethering, so they scheduled us for an MRI a few weeks later, on Halloween.  That was the day my world stopped again, you can only guess it's bad news when the Dr asks you to step into another room, while the nurse holds the baby.  One would guess correctly, we did get bad news. Her spinal cord was retethered which meant another surgery and soon.

We scheduled it for early December, and then stressed over the next several weeks about another week long hospital stay, another 6 to 8 hour surgery, possible NICU, you name it, everything went through our heads. I felt horrible about having to leave the two older girls again but they took it as well as possible.

Every little thing she does or doesn't do now makes me wonder if she's retethered. She seemed to be falling down a lot more over the last couple weeks, but now not quite as much, but I can't recall if it is more than prior to us noticing. :( I hate this feeling.  I feel like things have been going great, but now I am waiting for the other shoe to drop. I hope it's all in my head.

I will be back to update tomorrow evening once we get back.  Please keep us in your thoughts and prayers.

7 Months Ago

This was Kaitlyn 7 months ago just starting out to really walk, taking a few tentative steps but so excited! Fast forward to Sept of the SAME year and here she is walking and while not perfectly, she's improved sooo much. 

Overall she is doing pretty well over here, we have dropped to once a month speech and physical therapy, so I think we will graduate out by the end of this year.  She goes back to clinic on Oct 10th and we'll get to do all the fun tests, minus the MRI.  Sadly we don't get to see our wonderful neurosurgeon as he's moved on to another hospital :( We are going to miss Dr. Wellons. I hope we like the new one...fingers crossed!

Time

Time, where has it gone? I keep meaning to come and post updates, but honestly with summer here and all 3 kids home and the various activities they have going on, it's not much time left. I am exhausted by evening time, so it's put them to bed and veg out for a bit.

So a mini update will have to do.

Kaitlyn celebrated her 2nd birthday in May! We have a small party at a local park that is accessible for everyone, that was nice. She got to many toys and ate way to many cupcakes lol but she had a good time.

 So as you can see she had a great birthday, fit enough for a Princess who loves Elmo. :)

Kaitlyn has been doing really well healthwise, we've been lucky to not really have any appointments for her since clinic in April. We have been to the orthopedics guy, she got new braces, finally! We've only been trying to get them since April, um yeah. However they are great there and came up with a solution for everyone.  You see when we went to clinic in April they suggested straight non moving braces for her, because she "crouches" some when she walks.  Our physical therapist (PT) here said that hinged ones would be better because she sees her all the time and she knows better.  Oy. So we talked to the ortho guy and he had a great solution, braces that have an adjustable strap on the back, so they can be completely solid, no give or more hinged with some give. Yay. So fast forward to a few days ago when our PT saw her, she said she is kinda of crouching. WHAT??? you've got to be kidding me...I noticed it, but thought that it could just be the way she walks. Sigh.  So basically she suggests to pull the strap tight a few hours a day and then loosen back up to let her adjust to it and to walk better.  I'll be interested to see what the guys down at the clinic think in October.

We're still doing speech and physical therapy twice a month, so every week we see one of them and then we finally, after 6 months of waitlist, got into the UCP playgroup on Mondays. She cried so much in the beginning, but has started adjusting, this is her 4th week and she only cried for about 5mins they said. So hopefully next week will be even better. The great thing about the playgroup is they have all the specialist there, speech, pt and occupational therapy to help and it's FREE! They age out at 3, but also have a preschool readiness group I hope she can get into next year.

We won a local photo shoot contest, here are a few of my favorite shots of my baby, who isn't so much a baby anymore.

Good News

We took Miss K to UAB yesterday for her Spina Bifida clinic and everything is great! She had a renal ultrasound done and some x-rays and kidneys look good as does her hips. YAY! Such great news, they were happy to see she is walking more with and without the braces and walker plus she was in a decent mood so she didn't completely ignore and fight to move away from them the whole time.

We have a prescription for new braces now, so to get in touch with our insurance places, call and get an appointment and go get her casted. I am looking forward to this because I am very curious to see how the custom braces vs the ones we've been using change things.

Will update more when we get everything ready to go! :)

Walking & Talking

Miss K has been in PT for 9 months now and has come a long ways since July of last year.  She was super unsteady then and while she is still unsteady now, she gets around quite well with her walker and not bad without. Of course she still crawls a lot, but she's also on her feet more often now. I encourage her to walk whenever possible so that she continues to build the strength in her legs and ankles. She's able to walk across the room now without her walker, she will go from couch to couch, couch to door etc, wherever she can let go and try she does.  She's also recently learned how to push herself up from the ground to squatting to standing, YAY! That's a huge milestone and accomplishment for her.  Her PT was so happy with that this week. We have some more fun exercises to work on with her to continue her doing that and to gain more steadiness. 

 

Here is my K pushing herself up, she's getting better at it every time :)

Her speech  is progressing as well.  At her evaluation they had her at about 14 months, which was about 2 months ago. We've been working on getting her to talk more and repeat words, which she actually does most of the time for us, not so much for the ST lol . K is really shy, especially around new people, so she doesn't do as much for her as us.  I should record it and show them, so they believe me when I say she does these things.  In the last month I've taught her to sign "open" and "yes" as she always just grunted and pointed and then would get excited for "yes".  She's saying yes and signing it now, so yay for that. She also is using "open" more now, and tries to say it, but it's not quite right.  I know we're on the right track, so we keep working and pushing her.  She's also warming up to the ST and that will help as time goes. 

We head back to UAB on the 11th for her Spina Bifida Clinic, while I am anxious to get it done since we can go forward with getting her new braces, I am worried too.  She has to get the urodynamics testing done again and I hope they say there has been some improvement with her bladder since she has been on her meds.  Thankfully none of the testing that day require any sedation, just some renal ultrasound, xray and urodynamics and that's it. Of course it'll still be a long day, all the testing done in the morning and then after lunch we start our rotation of doctors coming in and out. 

Will keep everyone posted on the results when we find out. :) 

Fish watching at the Tn Aquarium

We're also participating in the SB Bowl-A-Thon this year, you can donate in honor of Kaitlyn by going to this link

General Update

This past Monday we headed down to UAB for K's post op MRI, that we had to reschedule from earlier since she was sick.  All in all everything went great, she did fine during the MRI and woke up a little easier this time from the sedation and we got the all clear sign from her doctor. So thankful for good results! The worst part of the entire process was her not being able to eat that morning or have anything to drink after 8, she was not happy about that.

We're still working with physical therapy from UCP/EI and it's going well. K can walk across the room without her walker.  Of course she is still a little unsteady, but she went from about 3 steps to 15ish on average.  She is so happy when she does it, we cheer her on :) We started speech this past month as well, she's so shy around new people so it's taking some time to warm up.  This time was better than last so I am hopeful the next one will go well.  When she was evaluated by the ST, she said she was at about 14 months in her verbal skills :( but I feel like she's doing much better and more than they think, because she is so shy.  I do think she is behind, I just don't think that much.

We go back to UAB on April 11 for her Spina Bifida Clinic, we get to see everyone (neurology, urology, etc) and it's an all day thing.  Dread that part, but now we know, so hopefully we will be more prepared. Other than that not a whole lot going on, we need to get her new braces soon, custom ones, which will be pricey. :/ but she needs them so we'll have to figure out how to pay.

Today also marks K turning 22 months! I have 2 months to plan a 2nd birthday party for her. We didn't do a big thing for 1st because of all that was going on with my mom, so I hope this one will be better :)

Kaitlyn Stepping Out

Kaitlyn has decided she wants to walk more, so this is what we've been working on.  She's up to about 7 steps when she gets herself steady enough.  Most days it is about 4 to 5, but I'll take it! The new walker is really helping her a lot and she uses it often.  She loves to go outside and walk, but the weather hasn't been cooperating, can't wait for Spring!

The Unknown

Tomorrow is another day of the unknown. K has her post op MRI at 9 at UAB.  I am stressed, nervous, anxious and holding my breath until we get the results.  In October when we were awaiting her clinic visit, I was worried something was wrong, and just felt like it was. I was right, she had a MRI to confirm the doctors suspicion, retethering of the spinal cord.  That resulted in her second detethering surgery on Dec 6, 2011.

So now we face the unknown again, another MRI, another wait and see moment. I can only pray that tomorrows results are good and that everything looks right, healing right and does not require further surgery. Words that are synonymous with Spina Bifida, wait and see. So much of our life, Kaitlyn's life is wait and see. Every child, every case of SB is different and the doctors can't predict what the future will hold, only give you an idea of what "might" happen, but there is no guarantee.

So tomorrow, we head out early to Children's South and then over to see our Neurosurgeon for the results. I am asking all our family, friends and SB families to please pray and send good thoughts for Kaitlyn tomorrow.

Update: Well we had to cancel the MRI, K woke up with a 101 temp at about midnight last night, so we're rescheduled for early March. :( 

Walking

So back months ago we got a walker on loan from UCP, it was older, heavier, non swivel wheels, but it worked OK. She used it on occasions but had trouble getting started and really needed to lean forward.  Turning was awful, as you had to sort of pick it up and turn slowly, repeat.  Well about a month ago, we traded the old one for a new one with swivel wheels.  It's a light weight one and it's made a world of difference.  She can get all over the living room and around the house and even outside, so she's happy.  We're still hoping it's temporary, but only time will tell.

She also recently started taking steps again by herself, she can get to 4 before she goes down.  The walker is definitely helping strengthen her ankles/legs, so I try to get her to use it as often as possible. Here's a short video of her walking with it and then a short video of her "singing".

A Month

It's been a little over a month since K had her 2nd surgery, seems kind of surreal. I know it happened, but sometimes it doesn't seem possible that it was just a month ago.  My little girl is AMAZING. I am not just saying that either. Looking at her today, you'd never know she just had major spinal surgery a month ago. Overall she's back to her normal self, plays, laughs, loves, eats, sleeps, etc. Only thing she isn't doing that she was before is taking a couple steps.  I am trying not to let it get me down to much, after all she did just have major surgery, so it'll take some time for her nerves and muscles to get back to normal.

I am still trying to get all my thoughts together about K's surgery, but this will have to do.

Monday Dec 5 - arrival in Birmingham for CT Scans, goes well, but we spend all day at the hospital with pre-admissions, blood work and test results. CT results are good, surgery will be complex and expected to take 6 to 8 hours.

Tues Dec 6- arrive at Children's Hospital around 5:30 am for 5:45 check in, which took much longer of course. Called back around 6:30 or so and they take her off to sedation at about 8 am and we're told surgery will start within the hour. 

This is where the waiting begins, there is no way to explain how hard it is to sit and wait to hear news about how your child's surgery is going.  I was antsy, nervous, scared, and probably any other emotion you can equate with this.  Finally around 9 they called to let us know that surgery had started.  We were told it would take 6 to 8 hours, so we knew we were in for a long day.  Thankfully they update the family every 2 to 2.5 hours, that makes it a little more bearable. Except when it's slightly over 2.5 hours and you begin thinking the worst. However for the most part our pager went off like clock work right around the 2 hour mark. 

Around 3 PM we got the call the surgery was done and she was doing good.  So then we wait for K's neurosurgeon to come out and talk to us.  I've never been more happy to see this man ( well except after her 1st surgery) and I wanted to run up and hug him. He tells us about the surgery, how things progressed, what needed to be done and what he did.  At one point he's telling us he has rolled up her spinal cord like a canoli and stitched it up..but then he said they lost all nerve roots. I sat there in stunned silence for what seemed like eternity, I know I had to be holding my breathe when he finally spoke again. He took all the stitches out and the nerves came back. I don't know how I didn't break down at this point. So he slowly stitched the spinal cord again, doing 1 stitch at a time to make sure the nerves didn't stop again and in the end everything was good.  I breathed a sigh of relief and anxiously awaited the nurse to come take us to the PICU waiting area.

K spent the night in the PICU because she had a drain in to watch for fluid and extreme bleeding, thankfully she only had to spend 1 night in the PICU. When they first brought her into the PICU area, they stopped in the hallway so we could see her, oh she looked so pitiful. Her eyes were swollen shut and she was crying for us and reaching out for us. It was heartbreaking. I knew it would be hard, but I had no idea how hard. They took her on back and after she finally got settled in and visiting hours started we went back to see her. She cried and cried and reached for us and wanted for us to pick her up. They ended up having to give her a dose of morphine to get her to calm down, so we went ahead to eat dinner and came back. She was asleep so we went ahead and went back to the hotel for some sleep, we were completely exhausted by this point.

Wednesday morning, we headed back to see her and she was doing a little better, still wanted us but not quite as distressed as the night before.  She started signing drink, so we got her some juice and she drained it lol. She was really thirsty and started signing more right away.  It made me feel better that she knew what things were and could ask for it.  Later that day we she got moved to a regular room and it was an awesome corner room, we had our own Christmas tree right outside the door. The first few days went by pretty quick, she slept off and on most of the time, we took turns sleeping at night in case she woke up so she wouldn't try to get up etc. She never had any other pain meds except Tylenol and Motrin once we were in the regular room. Amazing I tell you.

We were in a regular routine, almost as if we were home, cathing every 4 hours during the day, eating meals and snacks and naps. Only thing she couldn't get up, which by about day 4, she was done with laying down and kept trying to raise up in the bed to at least sit.  It did hurt some though, you could tell and she would lay back down.  Sunday morning her doctor came in and said we could pick her up, I was so ready and so was she. She clung to us and didn't want to be put back down and I didn't mind. While waiting for a few hours to pass to make sure her incision was not leaking etc, we walked around, saw Christmas trees, looked outside etc.  She kept smiling and waving at the nurses, so I knew everything was going to be OK. 

The first week home, was a little rough. She was extra clingy, sat with me on the couch 90% of the time, which was sweet but I felt bad she didn't want to get down and play. We continued rotating the meds at home to keep her comfy and returned about a week and half later to get her stitches removed. That was not fun, she cried from being held down and was not happy with us. Thankfully it went by fast and the doctor thought it looked great.  Since then things have been pretty much normal for us, trying to get into routine and get her back to where she was physically before the surgery.  So we've upped PT a few more times this month, trying to get her into outpatient therapy as well, waiting to hear back. 

We return Feb 6 for our post surgery MRI, hoping it goes well and it's not to stressful for K. I am worried she'll freak out more this time when they take her away for the sedation, but we'll see. Hoping this will be our last appointment until our April SB clinic day.  In the meantime I have 2 birthday parties to plan, one of her big sisters turns 7 in March  and then K turns 2 in May!

So that's been our journey in the past month, not clear nor concise, but i wanted to write while I was thinking about it. I am sure things will come to me and I'll edit this or just add another post.

Picture Time!

K turned 19 months old at the hospital

20 Months Old

Happy New Year!