September 25, 2010

Helping in the garden

Click HERE if you would like to see more pictures from our summer garden.

September 23, 2010

One more thing to do each day

Last month, before the latest shunt revision we took Annabelle to the eye doctor to discuss some concerns. We had been noticing that her left eye was turning in a bit and after bringing it up to the pediatrician she agreed it should be checked out. We met with Dr. Clark, a highly recommended Ophthalmologist and he confirmed that the eye was indeed turning in. Having him confirm this was disappointing, but not the worst thing in the world. However, I have to admit though, I was sad that there was yet one more thing "wrong". One more diagnosis to add to the list. It's called Strabismus and it actually quite common - click here if you are interested in learning more than anyone should ever need to know about it.

I'm going to be super honest here - it's my blog so I can do that, right? Annabelle had just gotten fitted for her AFO's a few days before this appointment so the thought of her having leg braces AND glasses just did not sit well with me. I know it sounds superficial and anyone that knows me, knows that I am not that way at all. But it did make me sad for her. Our daughter is beautiful inside and out, but we live in a world where people are very focused on the outer appearance. Annabelle will have leg braces and maybe more "equipment" throughout her life so honestly I didn't want her to have one more thing to get in the way of her connecting with others. As you can see from her pictures she is so expressive and has an amazing smile I didn't want that covered up.

After all the testing and three rounds of eye drops the Dr. gave the good news and bad/good news (confused?). Well, he determined that her eye was healthy, no redness or swelling and had good focus - this is good news. The bad/good news is that glasses will not correct her condition. This is bad news because if it gets worse then surgery will be necessary but it was also good news because as I mentioned before I didn't want her to have to wear glasses :-o

So we left with instructions to patch her right eye (the stronger one) for 1 hour each day and return back in one month for a reevaluation. We have been doing it almost every day with the exception of the days leading up to and after her latest revision surgery. She does not like it but in typical Annabelle fashion she rises to the occasion. She kind of yells at us in a crazy voice telling us that she is very unhappy and doesn't like it but then moves forward. She's visibly happy when we take it off and sometimes tells us in a similar voice how she felt about it but then once again moves on.

She is once again inspiring me to not complain as much and to try and roll with the punches as best as I can. She is such a trooper!

I have to admit that I don't think there has been any improvement yet, but considering she had surgery in the middle of the month I think he will have us continue this routine for a while and will monitor her progress for a few months. I will update again after her follow up appointment on October 5th.

September 17, 2010

Update on Annabelle's recovery

Sorry for the lack of updates since we got home from the hospital last Saturday. As you can imagine the first few days home were tiring and I always seem to struggle a bit adjusting to "normalcy" after a hospital stay - especially those that involve having surgery. Then of course we had to jump right back into life. This week Jack had his first full week of Kindergarten, Benjamin started preschool and Annabelle got her first pair of AFO's. Big milestones for my little people! Pictures of all to come soon.

However, in typical Annabelle style she really bounced back well. The first 24 hours she was still out of it but at about 5 pm on Sunday she woke up from a long nap and you could just tell she was feeling better. I took this quick video of her to capture her beautiful smile and amazing strength she was showing less than 48 hours after surgery. Yes, she still has that "funny" hair. Branden took the boys for the day to give Annabelle and I a quite house and I have to admit I was nervous to bathe her by myself. Thankfully, I have a wonderful hubby that is great at bathing the little ones, even when they have big an incision on their head.

I also want to thank you Rachel and Janine for the wonderful home cooked meals you brought us this week to help make the recovery days a bit easier. Words can not even express how much you helped and what a great relief it was to not have to cook those two nights. You are awesome friends and cooks/bakers!

Here's my three sweeties after their Daddy bathed them.
Look at that face. She just loves her brothers so much! They love her a ton as well.

Here she is trying to figure out what to do with this hair of hers. Sadly, Benjamin got the best head of hair out of the three kids.

I just want to say thank you again to everyone who has sent us love and prayers through their kind words. It is so special to read each of the comments on the blog or Facebook. I love when we get a comment from someone that you had no idea was even reading the blog. It's very exciting (yes, I am easily pleased). I'm a talker and since I am busy taking care of three little ones all day I don't get to talk with many people. So I love feeling like I have "shared" what's on my mind or what's going on with me and that my friends - both old and new, close and far are hearing me even if we actually rarely connect.

As always, thanks for caring!

September 11, 2010

Shunt revision # four

Can you even believe it. Our sweet Annabelle had to have another shunt revision yesterday (9/10/10). As I mentioned in my previous post, she had woken up on Wednesday night vomiting and of course we thought it must be another UTI. After being checked out on Thursday it was determined that her urine was super clean and no bacteria was growing. This was exciting for us because it's been almost non-stop UTI's since about May.

On a side note, we had recently decided to take charge of our urology issues and seek out a second opinion for her care. We connected with a new urologist, Dr. Roger DeFilippo, who is based at Children's Hospital LA. He has an impressive background and seems to approach his patients with the proactive attitude we appreciate. We met with him a week ago yesterday and were immediately impressed with his communication style and were secretly happy that he has a satellite office in Torrance - which is WAY closer than Los Angeles.

So back to the latest shunt saga. After another 24 hours of almost complete lethargy and sporadic vomiting Dr. McCormick, Annabelle's super awesome pediatrician felt it was best that I bring her back in to be evaluated. The pediatrician's office is within walking distance from the hospital so once she ruled out all other possibilities she had us walk on over to the ER for a full evaluation. It was pretty much a whirlwind after that. Annabelle was immediately seen by her Neurosurgeon Dr. Javaheri who thankfully was available and at the hospital. You all already know how great we think he. They did a complete shunt series (x-rays and CT Scan) and the determination was to more forward with the shunt revision that night. Dr. J clearly could have pushed it until the following day, but he is a caring man and didn't want Annabelle to suffer any longer.

Drawing some blood before heading off to surgery

It's so hard to see your baby in pain and feeling scared

They asked me if I would like to accompany her into the operating room this time. I was able to hold and comfort her until she was "asleep" from the gas. Although, it wasn't pleasant to see her this way I appreciated being able to see the surroundings she would be in, talk with the surgical team (who seemed great) and to be with her until she was no longer aware of what was going on. I am hopeful that I helped a little to make her feel more comfortable and safe.

The wait was long and stressful. It seemed like it was taking forever and I was pacing up and down the hall waiting to see Dr. Javahery. When he rounded the corner I burst into tears and said "what took you so long?" He gave me a hug and assured me that everything had gone fine and that she was on her way to recovery. It turns out the anaesthesiologist had a tough time getting her IV in so that held up the surgery quite a bit. I was so eager to see my little sweetie so he and I headed on over to recovery to check in on her. She was crying a bit but looked and sounded pretty good. They were attempting to give her a bottle but little Miss Annabelle acted as if she didn't know what to do with it. She did however nurse like crazy once I showed up. I love nursing her. I think knowing she's my last baby makes me treasure that special cuddle time even more.

Check out her incision and new haircut

Today's recovery hasn't gone as smoothly as we had hoped. She seems to be in quite a bit of pain and my heart is breaking for her. She's been nursing non-stop mostly for comfort I am assuming, but clearly my body isn't used to this much nursing and I was fearful that she wasn't getting enough milk. We offered her some juice and she sucked down the 8 oz in record time. We think that, on top of the nursing and the IV fluids were just a little to much for little tummy. She vomited big, which of course sparked them to take her temperature and reassess if she was well enough to actually go home.

Resting comfortably with Daddy

We were anxiously awaiting the removal of her IV which we believe was causing her some additional pain.

Annabelle was sporting CRAZY HAIR after this surgery! She had a major Flock of Seagulls hairdo in recovery last night. (example below for those of you too young to remember.) It's toned down a bit tonight, but still kind of silly.

So after a few extra hours of observation and a few calls to her doctors the decision was to let us go home. Thankfully, there is enough confidence in us as parents that if she takes a turn for the worse they know we will bring her back. She threw up again right when we got home, but her temperature had dropped to normal. She actually seemed to feel better after she threw up and was visibly happy to home. I nursed her a little more and then put her to bed where she is comfortably resting right now. We will be checking on her in another hour and our hope is that her temp is still normal and her fontanel is still flat or even sunken in a bit. I will of course update if by chance she has any major changes in her recovery.

Once again we are humbled by the amount of love and support that has come our way for Annabelle. The text messages and e-mails through FB and on the blog are just heart warming. I truly have no idea how I would find the strength each day to keep it all together if it wasn't for you guys. Knowing we are surrounded by so much love means the world to us and although I don't seem to find the time to personally respond it is not because I don't read each one or that I don't care because I do - I really do! So, thank you, thank you and I look forward to sharing happy pictures and good news about Annabelle very soon.

Good night friends

September 9, 2010

Little Reminder

I love how after a long day of feeling sad and frustrated because Annabelle is sick again I get a little reminder that this is only a moment in time. Annabelle WILL NOT spend her life being sick = I know this. My head knows this, but my heart is hurting for her today. They actually think it's the stomach flu - not even anything SB related :-) Who knows. All I know is she is sick and wants her mommy.

I saw this inspiring video on Face Book tonight and wanted to share it. Thanks for posting it Joanna. I think our SBKids Group from should do our own video. We have some SUPER cute kids!

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CDC Video Player.
Flash Player 9 is required.

September 4, 2010

First AFO Casting

We have had a VERY busy 10 days since I last wrote. I am happy to share that Annabelle has continued to improve each day and even had a few of her best eating days recently. It's apparent that if she feels well she will eat and she will poop - two very important things for her overall heath. We had several firsts (meeting new Dr.'s and new experiences) that I am excited to blog about this weekend.

On Wednesday, August 25th Annabelle was casted for her first pair of AFO (Ankle Foot Orthotics). We are very excited for her to get these next week so that we can start working on more standing exercises without fear of damaging her tiny ankles. She has shown a strong interest in bearing weight, when given the opportunity so I am excited to see what lies ahead for our sweet girl.

Here's some pictures of the process. We were pleased to have Peter (pictured below) making Annabelle's first pair since we met Peter on our SB Clinic "tour" when I was pregnant. He is a kind and caring man who took an interest in Annabelle from the beginning. He has seen her progress and seemed genuinely proud to be supplying her first pair. As expected, Annabelle was super great throughout the whole process.

He starts by measuring and marking her legs

Then he puts on plaster to make the cast

Annabelle saying she is "SO BIG!"

Then he cuts the cast off. He will use that mold to make the actual AFO

Then he starts all over again on the older legs.