A Week in Photos

It's taking me longer than I thought to write down a post about surgery week, so for now a few pictures from from the week for Miss K.

**There are photos of her incision further down the page, just a warning in case you're a bit squeamish, but they aren't that bad.

The night before surgery, very tired

Lipoma, before surgery

Lipoma, scarring from 1st surgery

Lipoma, also sacral pit

2 Days after Surgery

Still wanted to play with daddy's phone

Balloon from  SBA of AL

Day 3- looking more alert

Incision & stitches, goes up most of her back now

Stitches to the right are from the drain

Side view, a lot more fat was taken out this time

Sitting upright in bed, trying to get her balloon

Sitting with daddy! Happy to be held :)

Home! Loving her new elephant pillow.

Quick Surgery Update

I am very behind on posting since we had found out K needed surgery, sorry about that.  However, surgery went as planned on Dec 6th. We're still at UAB, until at least Sunday the earliest, but surgery went well overall.  Internet is spotty for some reason, so I'll wait until we are home to come back and post a full story about everything.

MRI Update

I am so sad, we found out on Monday that Kaitlyn has to have another surgery in December.

About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again.  So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.

We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.

Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit.  So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.

So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.

He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.

Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc.  Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.

* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.

Clinic Day

What an experience. We took K to her first Spina Bifida Clinic day on Wednesday, and it was interesting to say the least.  I wish we had been a little more prepared on what would happen that day, besides the general you'll have the testing done and meet with the doctors later.  Um yeah, I didn't realize it would be an ALL.DAY thing. We left the house around 7ish and got home at 6 that evening, to say we were exhausted is an understatement.

So where to start, I am not sure. I mean overall things were OK, not great though. I was really hoping for better news in all honesty, but that's not quite the case. We got through the ultrasound and x-rays just fine, the test we were dreading, was the urodynamics test. What should have been awful for K, was not.  Now to most that sounds good, but unfortunately this should have been quite unpleasant for her. Bottom line, she is starting to lose some sensitivity, which means less bladder control etc.  So now we have to cath her about every  4 hours to help make sure she is emptying her bladder completely, and we have to start her on ditropan.  I knew this was a big possibility since it is common for sb babies, but she had been doing so well, or at least I thought. 

That was really the biggest news, but in turn caused a little concern about her possibly retethering.  Not good, that could mean another surgery. We did not see the neurosurgeon, he had a surgery and then wanted to get a MRI done first.  So now we go back at the end of Oct for the MRI and then head over to talk with him and get the results. I am praying so hard that she is not retethered and needs surgery again.  

On better news the Ortho Dr and Rehab Med Dr, gave us good reports. Said she's doing well overall, she is doing well with the braces, has decent range of motion with legs/feet etc. One even said they thought she would be walking by 2 yrs old.  Still about 7 months way, but I am trying to stay positive.  Ortho suggested we get more PT than once a month, and maybe some OT too, so I'll talk with UCP here and see what we can do.

We also found out about a program in Alabama that helps pay for braces, supplies etc, and we qualify just because of  K's SB, so now we have to get all that started and hopefully that will help pay in the future on some of this stuff.  So now we wait.  Waiting for Oct 31 is going to feel like an eternity.

Where to Start?

I don't even know where to really start this blog post, I am really behind as you can see, since I never even posted a birthday entry. :/ I feel like a terrible mother, but know that I shouldn't let blog postings make me feel that way.  I am going to do my best to catch up on here in the next couple weeks, so you most likely will see updates from May until recent.  I know other SB mama's understand, sometimes life just gets in the way. 

For the sake of time today, I'll just post what is going on right now.  K has her 1st Spina Bifida Clinic on Wed, Oct 12. Yes I know for most that seems strange, since a lot of you have been doing Clinic days since your little one was born.  It's new to us, I still feel like we're having to get through this by ourselves, with out much help or guidance.  So come Wed, we get to have all kinds of fun tests, renal ultrasounds, urodynamics, and x-rays done, we're skipping the MRI this time (not our choice).  We are seeing our normal Urologist & Neurologist, but also seeing Orthopedics & Rehab Medicine.  Not sure what the last one is for.... any insights?

We're still working on strengthening her ankles, she's much more steady now with the braces. She cruises furniture, can push toys along and walk holding on to our hands, but not steps or standing by herself.  We're still doing PT twice a month, we have an appt today in fact.  PT mentioned bringing a walker, but not sure if  she remembered or not. We'll see. 

K is now 17 months old, I just can't believe she's almost one and half! My little baby isn't so little anymore, she's gaining weight and getting taller and cute as a button.  She's saying and/or trying to say more words, and signs all done, more and eat very well and uses them often.  She loves her sisters and loves they play with her and definitely misses them while they are at school. 

Last week we checked out a new playground here called "Everybody Can Play", it's awesome and K will love it even more when she's a little bigger.  It is wheel chair accessible, has astroturf in the jungle gym area, great swings, shades and hopefully next summer a cool new splash pad! She had fun playing and we can't wait to go back. :) 

I'll be back later this week with updates on our clinic day.

Oh I totally forgot! Last month I met 3 moms with SB kiddos! Two of them have kids just a few months older than K, so it was really awesome to talk with them and see their kids, and they are ADORABLE! I'm trying to start our own little local support group, so hopefully I'll meet more soon!

Pink Leapfrog and Kangaroo

More to come later :)

15 Months!

Miss Kaitlyn had her 15 month check up today and all is well.   She did not cry once during or after her shot today! I was shocked, but I really think she was to tired, she was asleep before we hit the first red light home.  We've been working on getting her to eat more, as at her last appointment she had dropped off the charts, not good, but since then she's plumped up a little. :) 

Stats for today:
8/10/11 - 15 months
Weight: 19 lbs
Height: 29.5 inches
Head: 45 cm

Overall she's doing well, we are still doing PT a couple times a month, and I can tell a huge difference in the things she can do now.  She's pulling up more, standing longer, pushing toys across the room easier and propelling forward on her riding toys.  She's also learned to climb real well lol but it's all good because it is helping her hips to loosen up.  The ped, mentioned he wanted to refer her to see an Ortho DR, but I told him we were already scheduled to see on in Oct, so we'll just wait til then. 

We are still waiting on her braces, they were supposed to be in last week but they weren't, so hopefully next week.  I am anxious to get them and see how she will do with them.  I know they will hinder her some in the aspects of how she currently moves and most likely will frustrate her, but I am looking forward to the positives from them. 

Previous Stats:

8/20/10-2 month check up (she's 3.5 months at this visit)
Weight 11 lbs, 12 oz 
Height: 23.5 inches long
Head: 40.5 cm

10/1/10-4 month check up (she's almost 5 months at this visit)
Weight 13 lbs, 4 oz 
Height: 24 inches
Head: 41.5 cm
12/9/10 - 7 month check up (7 months old)
Weight: 15lbs 3oz
Height: 25.75 inches
Head: 42.5 cm

2/22/11- 9 month check up
Weight: 16lbs 9ozs
Height: 26.5 inches
Head: 43.5 cm

5/10/11- 12 month check up
Weight: 16 lbs, 5 oz
Height: 28 inches long
Head: 44 cm

8/10/11 - 15 months
Weight: 19 lbs
Height: 29.5 inches
Head: 45 cm

Quick 15 Month Picture

 

Don't mind my husbands head cut off ;) wasn't on purpose lol 

So that's about it for now, will update more once we get the braces in.

Braces

And I don't mean the kind for your teeth.  We are about to enter the world of AFOs and KAFOs and I am just trying to go with the flow. Kaitlyn is now 14 months and at our last neuro appt I mentioned to them again about her weak ankles and not being able to stand for long periods of time without them giving out and or walking on the side. They gave us a "script" for physical therapy and told us we could use any PT in our area. So I talked to some friends and we called Early Intervention to see if we would qualify. Of course their response was that because of the SB she automatically qualified for free services. If our ped had listened to me months ago, we could have already gotten this show on the road and she could possibly be walking. I am soooo MAD. That's a story for another day.

So we had our initial appt, then our 1st PT appt this past Monday. She watched her play, stand up etc and determined she would need braces. She will get 1 for each leg. Her right foot, the least affected will get a AFO and her left one, will get a KAFO ( I think....) on the site she gave me, it really doesn't connect to the knee, but it has a piece that comes up the back/sides to help her from hyper-extending her knee apparently.

She did say that she didn't think she would need any other type of assist devices and she may not always need the braces but for now until her muscles strengthened she would. We are doing PT for the next 3 weeks and then in Aug, once a month. They showed us some stretches to do with her and also correct her "W" sitting as she does quite often.

Our PT will be back on Mon, to measure her for her braces. I am kinda sad but I am glad we have an answer and a plan. We go back to UAB in Oct for a clinic day (first one) and see 4 drs, plus she'll have her renal ultrasound recheck and a urodynamics as well.

Just wanted to update, since it's been awhile. She's doing amazingly well outside of the not walking and honestly I wasn't worried if she would be a late walker, but worried about her ankle/leg weakness. I am very irritated our ped wouldn't listen and he'll get an ear full from me soon.

Go Kaitlyn Go!

We're getting a little closer! She pulled herself up and took off across the room, by the time I got the camera she was done LOL We start PT on the 11th, so hopefully we're going in the right direction.

Still here & alive

Drive by post

We're all still here and alive, things have been super crazy in my life right now and doesn't leave much free time.  Kaitlyn had her neurology appointment in June, things were fine.  They listened to me about her ankles and recommended we do physical therapy.  So we had Early Intervention/UCP come today and get their paperwork done and a beginning assessment and later today our PT called and set up our first appointment which is on the 11th of this month. 

I promise to come back and blog in more detail soon!

12 Month Checkup

Today Kaitlyn had her 12 month well check.  Overall I guess it went fine, I am confused though on what to do about her weight...

Today's Stats:

5/10/11- 12 month check up
Weight: 16 lbs, 5 oz
Height: 28 inches long
Head: 44 cm

As you can see below, her 9 month old check up she weighed 16lb 9oz and that was without clothes, today's weigh in was WITH clothes and she's lost weight. :/ She is dropped now on the chart the last 2 visits, she's down in the 10th percentile.  I just don't know what to do, she eats, not perfectly all the time but when shes hungry she eats. She eats 3 regular meals a day and has several snacks as well plus juice and water and formula (now will be starting whole milk) daily.  I just want to cry.  As if we don't have enough things going on in our lives, lets add another.  Anyone have advice, please share.

Not only that but I am very worried about her ankles, the ped, doesn't seem to get it. I am glad we go see Dr. Wellons in June. I hope he can give me some answers.  Kaitlyn isn't walking yet, which is fine, I am not even stressing about that. She pulls up just fine, cruises the furniture a little, and can put the weight on her feet, but her ankles turn on the side. A LOT.  I thought putting shoes on would help correct it a bit, but she still turns her foot. It can be a sandal, tennis shoe, doesn't matter, she still does it.
 
Ex.

I know it looks like because she is turned she has her ankles turned, but that is not the case.  She does this a lot and often walks on them that way, which kind of makes her walk sideways a bit.  :( I feel so helpless, I am mad that the doctors don't seem to be listening when I talk about her ankles and such but damn it, they will listen when I go to UAB this time.

Next post will be a happier one, her 1st Birthday post, coming soon.

Previous Stats:

8/20/10-2 month check up (she's 3.5 months at this visit)
Weight 11 lbs, 12 oz 
Height: 23.5 inches long
Head: 40.5 cm

10/1/10-4 month check up (she's almost 5 months at this visit)
Weight 13 lbs, 4 oz 
Height: 24 inches
Head: 41.5 cm
12/9/10 - 7 month check up (7 months old)
Weight: 15lbs 3oz
Height: 25.75 inches
Head: 42.5 cm

2/22/11- 9 month check up
Weight: 16lbs 9ozs
Height: 26.5 inches
Head: 43.5 cm

5/10/11- 12 month check up
Weight: 16 lbs, 5 oz
Height: 28 inches long
Head: 44 cm

Random Update

So Miss K had an urologist appointment this past Monday down at UAB.  Though I could have sworn she was supposed to see both the urologist and neurologist but when I called to verify the time last week they only had her down for Dr. Joseph.  Sigh.  So I made an appointment for Dr. Wellons, in June.  I hope the next appointment we can get back on track for the same dates, since we have to drive about 2 hours for the appointment. 

Anyway, we got to UAB around 9 (appointment was at 10) and finally got processed and paperwork for the ultrasound around 9:30 or so.  Glad we got there a bit early, then we headed upstairs where they did the ultrasound.  She was a trooper, she did fine until we had to put her on her stomach and hold her down.  She wasn't quite fond of that. Head back down to the clinic, and I just knew we would have to wait much longer than I was hoping since they were busy, but nope.  We were in and out of there by 11 and that's probably a record for UAB.  ;)

Dr.  Joseph said everything looked fine on the ultrasound, her right kidney is slightly enlarged as it was 6 months ago, but nothing has changed so that's good.  He's going to keep an eye on it of course, and we return in 6 months.  They will do another ultrasound and then a urodynamics test as well...ugh.  Not looking forward to that.  It was hard when she was just a baby, so it'll be much worse now that she is older.

On other news, we have a tooth! She has been teething like crazy and I just knew weeks ago it was going to pop out, but no.  So we endured a cranky and drooly baby for weeks and then over this weekend it finally broke through.  THANK YOU. The other tooth/gum area is quite swollen though, so I hope it comes in soon. 

She's not walking yet, but does cruise the furniture a bit and pulls up all the time. I am still watching her left ankle, since it's a bit weaker than her right, and plan to ask Dr. Wellons when we go in June.  Other than that I am trying to prepare for her 1st birthday.  I haven't gotten anything done since my mom had her stroke, all my time and energy lately has been focused on that, so I need to get on the ball!

11 Months Old

Kaitlyn 11 Months old (and 3 days)

 

And for cuteness

10 Months Old

Kaitlyn 10 Months Old

9 Month Check Up

Kaitlyn has her 9 month check up today, we're a little behind due to a snow day a couple weeks ago.  Everything is going well, she's pulling up on everything, eating well and jabbering up a storm.

Date 2/22/11
Weight: 16lbs 9ozs
Height: 26.5 inches
Head: 43.5 cm

She is down a little on weight/height but proportionate so the doctor really wasn't concerned.  She's crawling and into everything, so that could attribute to the weight drop.  It's not much, it was slightly lower than last time as far as the chart goes.

Previous Stats:

8/20/10-2 month check up (she's 3.5 months at this visit)
Weight 11 lbs, 12 oz 
Height: 23.5 inches long
Head: 40.5 cm

10/1/10-4 month check up (she's almost 5 months at this visit)
Weight 13 lbs, 4 oz 
Height: 24 inches
Head: 41.5 cm
12/9/10 - 7 month check up (7 months old)
Weight: 15lbs 3oz
Height: 25.75 inches
Head: 42.5 cm

2/22/11- 9 month check up
Weight: 16lbs 9ozs
Height: 26.5 inches
Head: 43.5 cm

9 Months

Happy 9 Months Kaitlyn!

She's growing like a weed these days! I can't seem to keep her in clothing all of the sudden.  Now though we're moving up to 12 month clothes.  Most 9 month things are not long enough for her lol. I don't know where she gets that height from ;)

We have her 9 month appt on Thursday, so I'll have to come back and update with stats.  Miss K is pulling up on everything and is into everything.  If there is a small piece of thread on the floor, she finds it and tries to eat it.  Also we can't take to long fixing her bottle or food, she will start to yell at us, my little red head with a temper.  Though her hair is looking more blonde these days. 

Overall she is doing really well right now, there's not been much to report on the SB front (which is why this blog is kinda slow) but hey I will take it! I update in general on my other blog anyways. We have another appointment down at UAB in April for her next renal ultrasound and MRI.  Not looking forward to that again, but I know it's needed. 

I think I am going to participate in our Bowl-a-thon coming up in April, if I can find some team members and raise money for the SBA. So if you see me hitting you up for money, consider making a donation ;)

8 Months

Yesterday (1/8) Kaitlyn turned 8 months old! I missed a picture of course, so I took one today :)

8 Months Old

She likes babysitting mama too ;)

Kaitlyn is growing like a weed! She's moved on to stage 3 foods a little table food when I sneak it to her lol.  Tonight she had some mashed potatoes and she loved it. :) She's also started trying to "talk", yesterday she said ba-ba over and over.  Especially when you asked her if she wanted one. Awww my baby is growing up!

A Year of Changes

Wow, 2010 has come and gone and by far has been the hardest year of my life.  So much happened in 2010 and I am thankful that I and the family has emerged wiser and stronger than we ever thought possible. When life throws you a major curve ball, you handle it, you accept it and you move on from it.  Though we can move on, we can not forget it. Spina Bifida will always be a part of our lives, and that's OK. We'll live, we'll learn and we'll teach others about Spina Bifida and show the world we are strong and resilient.

My sweet baby will turn 8 months old soon, and while we still don't know exactly what the future holds, one thing is certain I'll celebrate every milestone, little or big, and rejoice in the fact she is here on Earth with us. I've read several blog posts in the last few days from my SB blogger friends and I've learned we grow stronger from every day life and are all much much stronger than we give ourselves credit for.

I saw a phrase on a message board:

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

I don't know who wrote it but it rings so very true and I feel that way every time I meet another SB family.

Happy New Year from our family to yours, may this year be full of blessings and milestones!