July 31, 2010

Moving in the right direction now

Ok, so I guess I need to make a public confession about Ditropan and this blog is as about as public as I get :-) It looks as if the Ditropan may not have been the cause of Annabelle's extreme high temperature . Yes, the high dose (2ml 3x a day) we were originally prescribed definitely caused some scary side effects and an "overheated" body temperature but as we now know the Ditropan was not completely to blame.

When Annabelle (finally) woke yesterday morning (the day of the birthday redo!) she was groggy, puffy eyed, super hot (although dressed only in her diaper) and just plain old not feeling well. Since the Ditropan had been out of her system now for about 20 hours we were pretty confident her behavior was now due to something else. Of course when you have a child with SB & hydrocephalus you immediately think it's the shunt or possibly a UTI. Unfortunately, she continued to not feel well and seemed to be getting worse. Her temp was rising, she wouldn't eat any solid foods and she vomited up her antibiotics again - ugh! All the while her fontanel was fluctuating between full to hard - it was never really emptying in my opinion. We are so blessed to be able to communicate so well with both Annabelle's Pediatrician and Neurosurgeon. After several rounds of calls and updates, the decision was to bring her into the ER yet again to get completely checked out.

We were given another "fast pass" at the ER because Dr. Javahery (Neurosurgeon) had called ahead for us - I love that man! All signs pointed to a shunt malfunction as her head was super bulgy when we arrived but her temp had also rose to over 103 again. Thankfully, they gave her a Tylenol suppository immediately and that helped quickly to get her temperature down. After a series of tests - same ones we did last Thursday, it was determined that the shunt appears to be working but that she has a pretty bad UTI. Her white blood cell count last week was 25 and this week it was over 700 so it really skyrocketed this week. Because this as become a chronic issue the doctors all discussed the best plan of action for Annabelle.

So, once again her is the NEW plan :-)

She received a shot of antibiotics at the hospital
She is going to go to the pediatrician this morning and get another shot of antibiotics
She was sent home with an RX for a 10 days of an oral antibiotic

We restarted Ditropan yesterday before we left the ER. The new dose is 1.4 2 x per day and the pediatrician will be working with the Urologist and the clinic team to come in an agreement on the lower dose.

We are still cathing her 4 x per day and I'm happy to report that I had success the 2 times I did it yesterday.

I feel so much better knowing that she will so be feeling better soon. So, needless to say, birthday attempt # 2 didn't happen yesterday but the good thing is Annabelle doesn't have a calendar so she has no idea this was her birthday week. Everything is ready and waiting for her once she is ready to celebrate!

I am CONFIDENT that these boring text/no picture updates are a thing of the past. I am SO ready for some cuteness.

July 30, 2010

Done with Ditropan - for now at least

Just a super quick update.

Annabelle and Ditropan do NOT mix. She has had 3 of the worst days of her life on that stuff. It even ruined her birthday yesterday :-( Her body temp has been ranging around 103 and will come down to about 101 with a cool bath. She's been lethargic and plain old miserable.

Look how miserable our sweet girl was yesterday. I wanted to take a picture of her on her actual birthday and sadly this is all I got. She could barely keep her eyes open.


Thankfully, we got the go ahead from the pediatrician (who btw was not the prescriber of this crazy medicine) to not give the last dose of the evening and she said she would be contacting the Urologist for us to work this out (yeah!)

So, thanks to this Annabelle (and Branden and I) got our first night's sleep since Monday! I will update later what the actual plan will be since I know that Ditropan is currently the only drug on the market for her bladder condition but for now we are going to pretend that today is her birthday :-) We are hoping the medicine is out of her system enough for her to enjoy the day - maybe open a few presents and taste some frosting.

Thanks friends for checking in on us!

Nicole

PS - Cathing is still rough. I was unable to do the morning one after MANY tries but grandma came to the rescue and was able to get it done. I was finally able to do the afternoon one by myself - YEAH!! Slow and steady progress :-)

July 29, 2010

Happy Birthday Annabelle

One year ago today, July 29th, 2009 at 2:10 am, you, our sweet baby girl, Annabelle Grace Flower entered the world, weighing only 4 lbs 9.5 oz and 16 inches long.



Look at you now!

From SB Blog Families Get together
You are an inspiration to all!

HAPPY BIRTHDAY BABY GIRL -
WE LOVE YOU

July 28, 2010

More cathing & Ditropan updates

So the 4 pm cathing was tough! The boys were better, I was not. They actually played tick-tac-toe and worked in the "workbooks" at the kitchen table while I tried to do it. Unfortunately, I just couldn't get it. After wasting 4 caths I just gave up and knew Branden would be home soon. We haven't gotten our first bill yet so I'm not even sure home much I am spending each time I open one :-o and I was told that my order will be for 1 month - nothing more - yikes! guess I better get this down a bit better.

Thankfully, Branden was able to do it when he got home from work. It's amazing how much is in there. Branden could see the kind f day I had and how miserably tired Annabelle was so he ended up taking the boys to music in the park on his own. The boys were super happy and Annabelle got a quite house to rest in. She and I laid down and woke about 15 minutes before they got home - who knew I was so tired too?

She was able to keep down her dinner and seems not so loopy on the lower dose of Ditropan. She is still very hot and wakeful - yes, she is still awake right now but am hoping she will settle down soon. The drama of today is over and tomorrow is our baby girl's birthday! There will be nothing but happiness tomorrow - it's the rule - you must be happy on your / your sister's / your daughter's birthday!!! I can't wait to snuggle her tomorrow.

THANK YOU EVERYONE WHO HAS BEEN ON THIS JOURNEY WITH US!

So many of you have been here from diagnosis to her birth to now her 1st birthday - what a blessing you are. To the wonderful new friends we have made who support me each day with your stories and words of encouragement - thank you! Annabelle even received two birthday presents from friends at the park tonight - thank you Shaw & Aranda Families. I can't wait to have her open them in the morning.

Ok, I need to get some sleep.

The "plan" revisited and slightly revised

It's only day 2 but I'm worried. Everything isn't going as smoothly as I had hoped. Annabelle is on 2 new medicines - Ditropan to relax the bladder and Septra to help fight infections plus she is still taking Zantac for her acid reflux.

Honestly, Ditopan is just a yucky medicine that no one wants their child on. The side effects are huge and Annabelle has exhibited many of them within the first 24 hours. She is flushed in the face, her body is over heating, she can't sleep. She was up until after 11pm last night and back up again at 3 am. This was after being awake ALL day. She was acting completely loopy last night as if she was all drugged up. It just really sucked and was very sad to watch. They have agreed to decrease her dosage from 2 cc to 1.4 cc three times per day

Today she has been a bit better, but not really for the best reasons. She has thrown up 3 times - at breakfast, during the so-called 30 minute morning nap and then during lunch. Branden thinks it's because she her nose is stuffy and she is gagging on her food or the foul taste of the medicine. I'm not sure if it's because all the medicines are making her belly feel sick - either way it's not good. It's disappointing because she is loosing the medicine and the little bit of food she ate.

Catheter training went well yesterday. My mom, Branden and I all attended and the nurse was very thorough and generous with us. However, doing something with the help of a nurse is always easier than doing it on my own. Branden cathed her last night and this morning and he did well - no real issues. I on the other hand found it a bit more difficult today at noon. I felt like I needed to stay home because she was due to cath at 11:45 but for any of you that know my boys you know that staying home doesn't always work. They whine and fight and make each other miserable. By noon I was pretty much over it and of course stressed out because Annabelle had already thrown up 3 times and it was getting very close to cathing time.

When I was ready to do my first cathing on my own I asked the boys to please stop running around the house like maniacs. Of course they wouldn't so I put them in the back yard to play - seems nice enough, right? Well, not to them. Within minutes they started fighting and because I had closed (not locked) the sliding glass door they assumed I had locked it. So, as I am trying to focus and hold her legs and private areas apart with one hand and hold this very tiny and slippery catheter with the other hand all while keeping everything as clean as possible the boys were pounding on the back door - good times!

I had a little trouble - girls have 2 holes which makes it a little confusing at times. I wasted two catheters and two diapers but I got it done. I know it will gt easier with practice and I will get that chance again in less than 2 hours.

I realize that some of you have and will say that I should let the boys watch TV to make my life easier when I'm cathing, honestly I don't agree. I really do not like TV and I don't like how my boys act when they watch it - they are zombies. Yes, it would technically make those moments easier because they wouldn't be loud or bothering me but it wouldn't make me feel any better as a parent. I believe that the children have the ability to learn to entertain themselves quietly 4 times a day without needing the TV as a babysitter. I use TV as a reward in the afternoon some days after we have played particularly hard, been super creative, or as time to relax if we will have a busy 2nd half of the day, etc. and I just can't in good conscience put it on to get them out of my hair during cathing time. That's just how I feel. Enough about my thoughts on TV.

Needless to say I have been a big ball of stress today, Annabelle is irritable & restless (fun side effects), she doesn't want me to put her down, the boys are feeding off of my stress and now are mad because I told them if they didn't nap I would not take them to music in the park tonight. Well, they have been messing around in their room for the last hour and not resting so I told them (in not so nice of a tone) - NO MUSIC IN THE PARK TONIGHT! So we have a lot of unhappy people over here today :-(

So, back to the plan:

They have decreased her Ditropan dosage and want me to play around with the times a bit to see if that helps with her ability to go to sleep at night.

I am going to attempt to spread her medicines out so that her belly feels better and she stops vomiting.

I am going to have confidence that I will get better and quicker at cathing

I will figure out a way to manage the boys high energy in a way that doesn't crush their spirit but still instills responsibility for their actions and respect for their sister

I am going to pray, a lot - "I can do all things through Christ who gives me strength." Philippians 4:13

Only 1 day until Annabelle's birthday!!!!

One year ago today (July 28th, 2009) Branden and I rushed off to the hospital because I was having some major contractions. I was only 35 weeks pregnant and super scared. The doctors were able to hold of delivery for about 12 hours - until July 29th, as our sweet Annabelle Grace Flower was determined to enter the world.

I was just reflecting on this past year of Annabelle's life. I can not even believe that Annabelle is going to be ONE year old this Thursday. If anyone is interested click here for the play by play leading up to Annabelle's birth.

This year has been a year filled with so much love and beauty, friendship and support, tears and more joy than we could have ever imagined. We were so very scared heading off to LB Memorial that sunny July afternoon - if only we knew then how amazing our daughter would be, maybe we would have slept a little better leading up to the big day.

What truly blessed people we are to have 3 such AMAZING children.

July 24, 2010

Whirlwind of a hospital visit

I was going to title this post:

To the ER, to the ER to buy a new shunt
Home again, home again jigeddy-jig......

But I wasn't sure if you would sing it like the nursery rhyme (to market, to market), and if you didn't, well then you would probably just think I was strange so I decided against it. But that is essentially what happened. On Thursday evening (July 22nd) Branden and I headed up to the hospital after Annabelle had thrown up 4 times and had a very hard and full fontanel (soft spot). She had thrown up once at about 1pm on her way to PT but I honestly didn't think much of it, and she had a good PT session. It was at around 4pm that she threw up again and became quite fussy. I then noticed her head and TRIED to stay calm. She threw up again and I was then pretty sure what was happening. I called Branden at work and then started getting myself, Annabelle and the boys ready for what was to happen next - a trip to the ER :-( I got Jack into the shower and then it hit me HARD!! I started bawling (no kidding), I was sort of freaking out that this was actually happening again. We had gone 5 months without a revision and I guess I got a bit comfortable and hadn't really thought much about it lately. Branden arrived home to me hysterically crying, cradling her on the floor - pretty dramatic I know :-( I'm sad to say that I scared the boys a little and I feel horrible about this. I did however snap out of it pretty quickly once Branden got home. I share this only because it seems so misleading to only blog about the good moments or the moments we are proud of and not the not so great moments. I am human (very human) and I don't always act as put together as I'd like, but that's okay. No one way hurt by my meltdown and realistically it probably helped me be a bit more calm at the ER which is where we headed after my WONDERFUL Mom got there to watch our boys.

Annabelle proceeded to throw up again (all over Branden) and then passed out - literally just zonking out before we left to the ER. The drive to the ER was horrible. Annabelle screamed the entire ride like she was being stabbed - no joke. It was scary and terribly sad. We got right in once again, thanks to our wonderful Neurosurgeon (Dr. Javaheri) who called to let them know we were on our way. I had called his office earlier and they told me he was off and that the on-call Dr. would be contacted once the tests were completed at the ER. I stewed about it for a few, then decided to call Dr. J myself (he gave us his cell # so I figured it was ok). I wanted/needed him to know since HE is her Dr. and knows her case so well. As usual he was great - he took my call, asked lots of questions, and told me he'd give the ER a call and not worry. He told me he was off, but not to worry he would come in for the surgery if need be. I later found out that he's not just off, he was actually on vacation - oops! He was kind enough however to call the ER to pre-check us in and then had multiple conversations with both the ER Dr. on staff and the on-call Dr. from his office.

She went from super unhappy, to happy and flirty, then very sleepy while we were in the ER waiting to see what the plan was. She had a CT Scan, chest X-ray, urinalysis and they unsuccessfully tried to get her IV started.

Here are a few pictures from the ER - playing peek-a-boo

Just hanging out with her Daddy

Checking out the monitors while Branden closely watches for her to put it in her mouth


We were admitted and moved to our room on the 2nd floor at about midnight. Then starts all of the questions all over again. It seriously seems like you answer the same questions over and over again - I really don't like that part (especially at midnight when I am hungry and tired!). They examined her and took her weight and head measurements - which was 1/2 cm larger than it ad been the week prior. The nurse was thankfully able to get Annabelle's IV started in one try. I didn't allow the ER nurse to try again after she was unsuccessful. On a previous ER visit they stuck her 4 times before finally calling the lab to do it. I become Momma Bear now when you start poking my daughter to many times! We also try and direct them to her feet since she doesn't have any feeling there. They allowed me to nurse her up until 2 am as everyone was under the impression that she had been placed on the OR schedule and would be having a shunt revision in the morning.

Thankfully, she slept well from about 2am - 8am, me not so well, but that's to be expected when you are on a pull out chair bed right in front of a door that continues to open and shut all night long (ugh!). Oh well, it could have been WAY worse. I actually don't have any complaints.

They next morning the consensus was that it didn't appear that the shunt was indeed malfunctioning. Her fontanel was soft, she was happy and alert. The PA for the Neurosurgeons office came in first with this info. and I was a bit shocked although I could see that she was doing much better. The thing is she has presented these same symptoms before but has always gotten worse and then would ultimately need a revision. I was concerned and confused. She said that Dr. J and the on-call Dr. would be discussing the test results and would let me know what the plan was within the next 2 hours. During that time I continued to watch how well she was doing and decided to believe in my heart that this shunt was actually working and that the night before had been a fluke - not an intermittent malfunctioning shunt.

So when the on call Dr. came in he spoke TO me, not WITH me. He told me essentially what the PA had said two hours earlier. He did explain that it is possible that the shunt is intermittently malfunctioning but doesn't believe so based on the tests and her overall demeanor (although this was his first time meeting our VERY happy little girl). Only time will tell he said. Thankfully, I was prepared for this and was actually ready to pack up and go home at this point because there was no discussing it - he just told me this and then left. Branden was still a little shocked as he had just gotten there and was still thinking she was going to be having surgery. If by chance you you were wondering, this on call Dr. is way more senior than Dr. J and yes came with that typical "holier than thou" attitude that you hear so much about from specialist, but in his defense, I am sure he is super good at what he does. I am glad I didn't have a lot of questions as I am unsure if he would have stuck around to answered them :-0

So once the Neurosurgery team signed off on her we had to wait for her pediatrician to see her and decide if she could go home or not. She still had a UTI they were treated her for with IV antibiotics but it was essentially what I was giving her 3 times a day at home so there really was no need to keep her. He sopped by, checked her out and agreed to get her out by 2 pm.

Here's the nurse doing her final examination and removing her IV

This is how happy she looked when I told her we got to go home and see her brothers - so sweet!

The fontanel stayed soft all day on Friday. Once we got home Annabelle took a 4 hour long nap, was awake for 2 hours then went back down for the night. Not typical if I do say so myself. She is either trying to catch up from the previous long and exhausting day or is very sleepy because her shunt IS malfunctioning.

She woke today (Saturday) and seemed fine for a while. She threw up three times - all while eating very small amounts of her favorite foods. She took a morning nap (not typical) and woke irritated. She wanted to be held all day and generally seemed to not feel well. Her head was soft though. At about 3 pm she started crying really, really bad and at that time we felt that her fontanel was hard and bulging again. We got her to calm to see if there was any change in her head - there wasn't. She then zonked out for about 45 minutes. When she woke, her head felt better but she was still irritable and not herself.

So what do we think is going on? Honestly, we don't know. We are confused and worried. She is still semi-awake right now (at 10pm). I nursed and nursed her and she just isn't settling down. Bran has been rocking her for the last hour and I still hear her making noises. It's probably the shunt, I guess we will just have to wait a bit longer to see. I will update again tomorrow night.

To all of those who knew we were heading to the ER and were praying and supporting us all night long THANK YOU. Words cannot express how much your love and support lifted me up during this very scary situation.

July 21, 2010

4th of July fun for Annabelle

We started our morning off with the Annual bike/scooter/stroller parade.

After the parade we all met up at the park for some fun games and visiting with friends.

Annabelle with her big brothers

Hanging out with daddy while mommy & brothers did a little dancing to Footloose!!

Annabelle & Benjamin doing a little dancing of their own.

Jack hurt his foot on the dance floor so he was being a bit grouchy at that moment.

We bundled up (California style) as the sun was setting to get ready for the fireworks show!

There are lots more cute pictures that I will eventually post on the family site and link HERE (when I get a moment). Hope your 4th of July was super great as well!

July 15, 2010

The Plan

So, we had Spina Bifida Clinic at the hospital on Tuesday afternoon and the meeting with the Urologist went better than expected - better is an odd description, but it's all I could come up with right now. We came prepared to get answers and create a plan of action with the Urologist. Thankfully, that is what happened. He was more patient and less condescending (sad, I know) than he has been in the past. Because I had done SO much research and gotten some great info. from my friend Liz (thank you!) I came with focused questions and a good base of understanding. This all seemed to help very much.

So, here's the plan:
  • Annabelle will start taking a low does of Septra (an antibiotic) everyday to help ward off any future UTI's
  • Annabelle will start taking Ditropan 3 times per day. Ditropan reduces muscle spasms of the bladder and urinary tract. It is used to treat symptoms of overactive bladder, such as frequent or urgent urination, incontinence (urine leakage), and increased night-time urination. BTW - it tastes HORRIBLE so I'm guessing I will be battling her locked lips each day :-(
  • Lastly, we will start catheterizing Annabelle 4 times per day. We will be doing training at the hospital on Tuesday, July 27.
We ask that you please pray for us as we (mostly me) gets used to this new routine. Life over here can be pretty crazy having 3 little ones and now adding in lots more medicine and cathing my sweet Annabelle. It's overwhelming for me to say the least! Branden too, but he will be a work for most of it.

We will repeat the VCUG and renal ultra sound in 3 months to see if all of this has helped reduce her kidney reflux and take some pressure of of her bladder. We feel that staying positive and having a firm belief that we WILL see a difference come October is really all we can do right now. We ask that you please stay positive with us.

Moms who are currently doing this and have other kids please share with me how you actually get it done. I am very worried how I will focus on cathing when I have a 3 & 5 year old running around my house. How do I do it when it falls right in the middle of preschool & Kindergarten pick up? What happens if I need to cath and we are at the park or one of the many, many other places I am each week with my kids? Please just help ease my mind a bit - it's still spinning.

I have been reflecting on this quote a lot this week :
If God brought you to it, He will bring
you through it

July 12, 2010

Update on today's happening's and the disappointing test results

Unfortunately, Annabelle woke up this morning a little warm (99 temp), then proceeded to vomit up her morning milk then went immediately back down to sleep. So it was pretty apparent that she wasn't feeling well and sadly we are getting pretty darn good at catching the signs of a UTI. Thankfully, we were able to get an afternoon appointment with Dr. McCormick, her pediatrician, and after a thorough examination and some test it was confirmed that Annabelle does indeed have a urinary tract infection. This is UTI # 5 - not cool! Thankfully she is in pretty good spirits but her temp continued to rise and she threw up again. She's sleeping now - in her own bedroom I'd like to add :-) We moved her over the weekend and she slept there for the first time last night - yeah. It's so great to be blogging with the lights on. I am usually sitting in the dark in the corner praying she won't wake up. We are hopeful that the medicine will kick in by tomorrow and she will be feeling much better soon.

Speaking of tomorrow - ugh - we have Spina Bifida Clinic at the hospital. We will be meeting with Annabelle's Neurosurgeon which I am happy to report we haven't seen since her last surgery in February and then meeting with her Urologist. We have LOTS to talk about with the Urologist and frankly, he's not much of a talker. I am a bit nervous about tomorrow. I need to work on my list of questions and talking points or I know the conversation will be very one sided and I'm NOT a fan of that, especially when we are talking about my daughter.

Here are the results from Annabelle's VCUG and Renal Ultrasound on July 7th. I am taking this directly from the Radiologist's report so it's quite technical but I want to document it as it is written plus I think it might be helpful to read for anyone who's child has a similar condition.

Just to clarify since I received a few question previously, this is kidney reflux not acid reflux,although Annabelle has acid reflux as well. Click here or here if you would like to read a bit more about Vesicourteral Reflux.

Comparison:

VCUG on 8/6/2009 and VCUG on 12/1/2009

Findings:

Scout film shows spinal dysraphism with right VP Shunt. Following placement of a latex-free catheter, Conray 43 was instilled into the bladder.

Small elongated bladder contour is again seen. There was reflux up the left ureter during bladder filling, to the left kidney. Mild hydronephrosis and calyceal blunting is seen. There was some leakage of contrast into the urethra at about 25 cc, and the contrast was stopped at this point. Total fluoroscopy time was 4.2 minutes.

Impression:

New left Grade III reflux
__________________________

My heart just sank when I read grade III. Reflux is graded from 1 - 5 with 5 being the worst. They will often recommend surgery for grades 4 and 5 so a grade 3 is pretty bad in our eyes. We are unsure what the Urologist is going to recommend but we are hoping it will be a low does of antibiotics, possibly medication to relax her bladder and then a cathing routine to help empty her bladder. I write this as if it's no big deal, but believe me to us it is a total big deal, but we are in NO way going to allow further damage to Annabelle's internal organs. They must be protected at all costs and if this is what we must do to help reverse what is happening and help heal her bladder and kidney's than this is what we will do.

Here are the results from the renal ultra sound taken the same day, July 7th.

Comparison: 3/2/2010

Findings: The right kidney measures 5.2. cm in length with mild right hydronephrosis. The left kidney measures 6.4 cm in length with moderate to advanced left hydronephrosis. This appears worse since the last study. No renal stone, mass or other abnormality is noted.

The imaged pancreas and aorta unremarkable. The urinary bladder is thickwalled.

Impression:

1. Moderate to advanced left hydronephrosis, appearing worse since the last study on 3/2/2010

2. Minimal right hydronephrosis

3. Thickwalled urinary bladder. Rule out cystitis.

Click here if you would like to read more about hydronephrosis

What more can I say, pretty disappointing, but this won't break me - NO WAY!! Our little girl is strong and she needs strong parents. So we will continue to fight the good fight to help make her feel better. We love Annabelle SO MUCH that none of this matters in the big picture. We are SO VERY blessed to have her and we thank the Lord every day for her. She and her brothers truly are our gifts from God.

I will update soon how clinic goes tomorrow. If anyone actually made it to the bottom of this super long post (sorry), thank you for taking the time, thank you for caring and thank you for being part of our lives.

July 11, 2010

Anyone see a family resemblance?


My mom just sent over this 9 month baby picture of me. I think our little sweetie looks a little like me :-) What do you think? Thanks for sending this over mom!

July 7, 2010

VCUG and Renal Ultrasound today

Off to the hospital we went bright and early this morning to do "the dreaded tests". Yes, I call them the dreaded tests. No they aren't horrible, but they aren't much fun either. Annabelle had to have these same tests 6 months ago and although the test itself was really horrible - really it was. It was filled with lots of crying and unnecessary drama due to what seemed like an inexperienced technician and some strict rules that I didn't know how to protest at the time, but the results were good - no reflux!

Well, this time we had a much better nurse and technician and I was armed with knowledge and confidence so the test itself went SO much better. I asked that they not strap her arms down (at least at the beginning) and asked them to trust me that she wouldn't protest too much during the first part of the exam. Annabelle of course didn't disappoint. She was so sweet and happy and as social as always. Due to her paralysis and lack of feeling from her waist down it wasn't really much of an issue for her when they cathed her. Her problem comes when her arms need to to be held/strapped up above her head . I think it's probably uncomfortable for her due to the tightness she has in her shoulders and neck and probably a bit scary as well. Thankfully, this was only the last part of the test and I was able to be with her while wearing my big lead apron.

So, now the bad part, yep, there's a bad part. The VCUG showed that Annabelle has developed reflux. Obviously, this was very disappointing. I KNOW it's common for people with Spina Bifida to develop this, but honestly, knowing this doesn't make the diagnosis any easier to accept. At this point we don't know the severity of the reflux or the result of the renal ultra sound but should have those results in the next few days. We are scheduled to meet with the urologist early next week to discuss the next steps.

So, that's the latest. There are a few more "issues" going on like eating or actually not eating, which is resulting in her lack of weight gain. We are also struggling a lot with gagging and vomiting when she does eat which of course is also contributing to her lack of weight gain - ugh!

Yep, I'm frustrated and I'm sad right now. Sadly, I have been struggling with this for awhile now but honestly, I find it much easier to just post cute pictures of Annabelle than to share what else is really happening over here. I know we will work through this and my frustration will subside but for now this is where I'm at.

More cute pictures to come - as I said that always makes me happy! Thanks for listening and thanks for caring it really does mean a lot.

Nicole

July 3, 2010

She's moving forward

And we are SO PROUD of her!





Just hanging around with mom






June 20th - Father's Day at the Nature Center

Getting ready for swim class

Annabelle and I have been taking a swim class at Tichenor Orthopedic Clinic on Tuesday's. Annabelle loves the water and it has been a really fun activity to do together. Here she is just hanging out while I got us ready to go - so cute!

She may be little (too little some doctors say), but she does have some meat on those bones. I love her chubby legs!


June 22nd