April 19, 2010

SB Clinic tomorrow

Spina Bifida Clinic tomorrow.

What they will say? Who knows, The anticipation of clinic is really, really hard for me. I was a big ball of stress today. Sadly, I didn't even realize why until the day was almost over and I had been a big grump :-(. Thankfully, our life is good, so good that Annabelle's Spina Bifida dose not consume my every thought. However, preparing for clinic is tiresome and stressful. It probably doesn't have to be, but when you are a worrier like me it is.

Annabelle will be meeting with Dr. Cunningham, her Orthopedist and Dr. Cassedy, her Physiatrist (Rehab). I assume there will be a few others but those are the two main doctors she will be seeing. I'm nervous about approaching the subject of a stander with the Orthopedist. I'm not sure how he will respond. Some reports I've read indicate it's time, others say she's too small and not ready. We just want what's best for her and don't want to passive in our approach to her care. I also want to talk with them about her getting Aqua therapy and possibly seeing a chiropractor. I'm also going to request that we get to see a dietitian soon to see if we can get help with Annabelle's chronic constipation. I am attempting to manage it WITHOUT the use of medicine or laxatives. We aren't however having much success. There is so much on my mind right now and I want to be prepared with my questions.

I was looking back over Annabelle's blog recently and I noticed that I tend to mostly blog about Annabelle when I'm in a good mood or am excited about something new and exciting happening. I also noticed that several times I would mention that something was going on, or that we would be going to clinic the following day or how horrible her VCUG was and that I would write more details about it later. For some reason I never seem to get back to those posts. I guess that's fine, but it doesn't really give a clear picture of all that is happening with her. I do know that after each of our past 4 clinic visits I have gone to bed super early. I think the stress of the day just beats me down and I finally crash once the kids do.

Since this is her book I feel like I should try to actually document as much of the ups and downs not as I can, not just fun pictures from physical therapy and her cute little face. Please know that I am by no means looking for sympathy or "I'm so sorry" e-mails as that is not necessary at all. Anabelle is an absolute joy and we feel so very blessed to be her parents. We openly accept all of the challenges that may come along with raising her but the fact is sometimes I feel a bit overwhelmed by it all and I think I should be more open about expressing it. I think it's only fair (what's fair, I hate that word) to myself and to anyone else out there reading this who might be in a similar situation. The fact is our life is really great BUT that doesn't mean it's not hard, scary and overwhelming at times. I know being Annabelle's mom is making me a stronger, better person and I am so thankful for that.

I will do my very best to document what happens at clinic tomorrow. I'm sure it will go great, but I know I won't relax until it's over. Any extra positive thoughts you feel like sending our way tomorrow are greatly appreciated.

Thanks friends!


  1. Grammy and GrampyApril 20, 2010 at 8:19 AM

    I Love You Sweetie, and pray that Clinic goes smoothly for all of you. I'm looking forward to having a fun day with her big brothers.

  2. +++ thoughts for you and her.

    We just went to our first clinic too and I was scared. It was cool to hear about him, but a huge reminder of the SB instead of just how wonderful he is. Good luck.

  3. Try not to fret little mommy. I'm sure the doctors will have GREAT positive things to say about your little sunshine! And YES it is stressful wondering what the best theory is (the docs went back and forth right in front of us as to what was best about AFO's and BOTH theories sounded good! ahh!) but just know that if it was a BIG deal with lots of research backing it up - then there would be a clear-cut answer...the fact that there's not just means it's okay to go one direction and if it doesn't work to change courses. It won't mean life or death or cause any permanent damage to do one thing for a little while or wait and hold off if they should say so. We don't have a stander or AFO's or ANY equipment for Jet and sometimes I'll panic thinking "everyone else has this or that!" but at the same time think "but if he doesn't need it yet that's a good sign too right?" So you are NOT alone in wondering and worrying. Just trust your gut...and the doctors a little...:) And I'm sure everything will be fine and wonderful! On a happy note I CAN"T WAIT TO SEE YOU THIS SUMMER!!!!!!!!!!

  4. Oh...and have you tried plum juice and pears? We put 3oz of plum juice (not prune..plum..it's sweeter) in all of Jet's bottles (about 5 bottles a day...approx 15oz of juice a day I guess) and I feed only him the baby foods (he only likes the fruits anyway) that have 3 or more gams of fiber in them...pears are a great one....and pears mixed with anything. I've also backed WAY off of rice, white bread (I give him toast on bread with 4 grams of fiber per slice) bananas, etc....just to help his digestion as well. Just a thought. You may have tried this. The next step they told us at clinic was glycerin suppositories to help stimulate. Haven't tried it yet. It's all about the neuro-genic bowels being so weak that he can't push it out. It will just be sitting there (i know...kind of gross) so i can't see how much suppositories will help...but with the high-fiber diet making it softer and easier to move on through it's helping him go more regularly. Hope this helps!

  5. Hope everything goes well! I love that you're being so proactive about the different therapies you want (chiropractic, aqua, etc). I really, really want Isabella to see a chiropractor, but we haven't yet. I also tried to keep her off Miralax for as long as possible. I think she was 2 before we regularly needed to put her on it. And that's just because my kid went through a picky eating stage that didn't include produce. :) Lots of good options (like Joanna listed above) for helping with their little digestive system though! Probiotics are awesome, and so is Organic Flaxseed Oil.