November 28, 2010

Foot Bowling

Have you heard of it? It's Annabelle's latest new sport. Okay, not really, but it is super cute to watch. These pictures and video are from November 8th. Thanks for caring enough to take a look.



Check out our little athlete!

We are so lucky that Emi, Annabelle's therapist makes exercising so much fun each week. Can you even believe how strong her legs are getting?

November 27, 2010

Halloween 2010

Annabelle, our little kitty Cat

Annabelle LOVED her costume. She was all smiles all night!


She loved hanging out with her big brothers: Jack "the knight" and Benjamin "aka Lightning McQueen"

It was a very fun, low key night spent with family and friends.

November 26, 2010

Stepping off the treadmill

During PT last month (October 27th), Annabelle's therapist thought we should see how she would do with a walker verses being on the treadmill. As expected she took right to it.



She's a bit distracted in this video but is still making great progress.

I just re-watched the video and she's super distracted. We had a "guest" at PT that day and Annabelle was very interested in her. It's still super exciting to see the progress she is making since she got her AFO's in September. Thank you for celebrating her success with us!

Our big girl is learning to color


Annabelle wants to do everything her brothers can do - I LOVE that!

Pumpkins and Apples and Walking OH MY!

Last month (October 9th) we took the kids for a super fun day of apple and pumpkin picking. Here's a few pictures of Annabelle from that day.



Okay, so she's isn't walking (yet), but her AFO's are really helping to strengthen her legs and she's taking every opportunity to practice walking. She's doing so well, if I do say so myself.


Click HERE if you would like to see and read more about this super fun pumpkin and apple picking day with the family.

November 18, 2010

How my day started

When I heard Annabelle waking up on the monitor this morning, I asked Ben to please go in and be with her until I could get her. He gladly trotted off to her bedroom. When I walked in this is what I found - adorable, right? I had to run and get my camera.

These two are just so sweet to one another.

They were just giggling and giggling - I loved it!

siblings - what a blessing!

November 14, 2010

Feeling so much better

I'm happy to report that Annabelle is feeling SO much better. We made it out to the park for a little bit this weekend and we could tell she was happy to have some fun again. She is still having moments of intense crying and eye rubbing, typically right after her nap. We are not real sure what this is about - is it pain, blurriness, or what? But she works through it after what seems like an eternity but is probably more like 10 minutes. We are hoping this will subside very soon. She also has had very goopy, glued shut eyes when we go in for the late night cathing. We have had to clean her eyes with a damp cloth to remove it. I read this was normal for the first few days so I am hopeful she won't have this much longer.

I figured everyone would like to SEE that she is actually doing better, not just read that I said so. Here are some pictures from this weekends park visit.




We go back to the eye Dr. next Thursday for a follow up to her surgery

November 12, 2010

Very quick update

Our sweet Annabelle is resting so very nicely this evening. She had a good day filled with lots of napping and cuddling with me (mommy). Her eyes are red but the swelling has gone down significantly. Thankfully, she does not seem to be in much pain just a bit uncomfortable at times. We return to the eye doctor next Thursday for a follow up on the surgery.

Rest well blogging friends.

November 11, 2010

Recovery

Honestly, I am so wiped out from the last 24 hours that I don't have to much to say tonight. You can see in these pictures she is sad and uncomfortable. It was very difficult to come to the recovery room to a hysterical baby who was crying tears of blood. She didn't want to nurse (this is very uncommon for her) but did eventually drink about 8 oz of juice from a cup. They gave her 3 doses of pain medicine in the first 30 minutes because she was really struggling to calm down. Finally the medicine kicked in and she was zombie-like. This was scary for me to see.

After resting a bit the nurse offered me something to drink and some crackers. Annabelle heard the word cracker and she immediately sat up - she practically shot up off my chest. I told the nurse I thought Annabelle wanted some graham crackers. Boy was I right! Annabelle took those crackers so fast - she had one in each hand and was shoving them in her mouth. She also ate some fruit and oatmeal baby food I had in my bag. The nurse was very comfortable with how she looked and they released us at about 10:30 am - just 3 hours after the surgery.

She didn't sleep too much but would fall in and out of sleep. We all rested a bit in our bed and she returned to nursing as well as eating an almost regular diet this evening. She is currently only taking Tylenol for the pain but seems to really need it as it gets close to the 4 hours being up. She also has antibiotic eye drops that we (Branden) will need to put in twice a day. The corners of her eyes are still very red and she seems to be having a bit of difficulty focusing in on us, but it is still very early and we assume the eyes must have some healing they need to do.

We appreciate your continued prayers for Annabelle's full recovery and prayers that this surgery was a success.




The pre surgery wait


yep, Annabelle was sporting her new REDEFINING SPINA BIFIDA shirt this morning

Reading with Daddy

Waiting for the beeper to go off to let us know it's time

That's our girl - happy, happy no matter what.

Once they were ready for her, I was able to go into the OR with her. I held her hands and talked to her while they administered the gas to put her to sleep. She was afraid but didn't cry much. She didn't fight and fell asleep quickly. The Dr.'s and nurses promised me they'd take good care of our sweet girl - I pray they will.

I came out a 7:35 and was told the surgery should take about 30 minutes. it's 8:15 now so we are hopeful to hear something very soon. Thank you all for being with us today.

November 10, 2010

Our first planned surgery

is tomorrow morning (Thursday, November 11th) and I have to admit that I am feeling really stressed out about it. We have to be at the hospital at 6 am and the surgery is scheduled for 7:30 am. I am thankful she is the first surgery of the morning but, yikes 6 am!

Strabismus surgery is certainly less invasive than then any of Annabelle's previous surgeries, but it's still surgery and she will still be under general anesthesia. I think having it "planned" is giving me much more time to think and worry about it.

We certainly appreciate knowing that all of our family and friends are praying for both Annabelle's quick and painless recovery and for the doctor who's performing this delicate surgery on our baby girls eyes. Barring an complications, Annabelle is expected to come home sometime tomorrow - thank goodness. I know we all sleep much better in our own beds.

Mom and Fred - thank you so much for keeping the boys overnight and tomorrow. I know they will have a blast!

Dad - I'm sorry I said not to come to the hospital, I hope you understand. When Annabelle is in surgery I feel like I am paralyzed with fear until the Dr. comes out to tell us she is awake and in recovery. I just somehow do better pacing/blogging and being on my own during these overwhelmingly stressful time.

Please know that we feel your presence and love around us while we wait. I will update again sometime tomorrow.

November 8, 2010

Annabelle's AFO's (week 3 - kicking)

September 29th - kicking the ball on the treadmill

This was the end of her PT session and she was really wearing down, but in true Annabelle fashion she did as we asked with very little fussing.


She had just kicked the ball, but of course I wasn't video taping. Emi told her if she did it again we could be done. Oh and BTW - Annabelle made sure Emi remembered the deal they made :-)


We had no idea at the time, but just one day later Annabelle ended up in the ER at Long Beach Memorial because she had a raging UTI. It's amazing and inspiring to me how hard this little girl works.

More great videos to come - I'm on a roll now! Thanks for checking in.

November 7, 2010

Annabelle's AFO's (week 2 - the progress continues)

September 22nd - waiting to start PT


She wasn't too sure about the treadmill at first but quickly became more comfortable.

We have been patching Annabelle's right eye for 1 hour each day for a few months now. I try to remember to do it while we are at PT so I don't have to think about it again later in the day. The only down side to this is that I love taking pictures during PT but not so much with the patch on.



Annabelle's therapist was quite impressed that she was able to be vocal while walking on the treadmill for the first time. She said many kids cry the first time and if they aren't crying they are concentrating so hard that they don't talk. I was overwhelmed with happiness seeing her "walk" on the treadmill.

Thanks for following us on this journey - more exciting progress to come!

November 5, 2010

Annabelle's AFO's (part 1 of this awesome story)

On September 16th Annabelle and I nervously waited for her to be fitted for her first pair of AFO's. It was exciting and scary all at the same time. I had such mixed emotions at first which were quickly replaced by feelings of pride, hope and excitement for what these awesome new braces might do for her.

The "fitting" went well, considering I had crazy boy Ben with me. A few minor modifications needed to be made but Peter was very thoughtful and offered to overnight them to our home so she would have them for the weekend.

THEY ARRIVED!!
I have to admit, I didn't rush to put hem on her right away. I looked at them when the package came but opted to wait for Branden to get home before trying them on her. Thankfully after her bath Branden was eager to put them on her. They are really so cute and fit her very well.

We didn't have any shoes ready for her, but stood her anyways. We were so pleased to see the excitement on her face. It was immediately evident that she was going to like standing up

This isn't an AFO picture but I loved how she was digging through her books. She had them on and surprisingly they were not hindering her floor mobility.

Saturday morning we broke out "the shoes" and did some real standing. These were loaner shoes from her therapist that were way to big but they did the trick. She was SO excited to be able to play with her toys at eye level - such a great new experience for her.

September 20th - Her first time at therapy wearing AFO's

Here she is waiting in the lobby for Emi, her therapist to arrive.

Aren't her little pink shoes so adorable?

Annabelle's willingness to try whatever Emi and I throw at her is AMAZING! She wasn't loving this at first, but trusted Emi and was willing to give it a try.

Annabelle doing a silly little dance for her Dad

Check out that smile and tell me she's not having a GREAT time!

As you can see, Annabelle had a GREAT first week in her AFO's and is progressing by leaps and bounds. Please check back for the next installment of "Annabelle's AFO's" I know you won't be disappointed!

November 2, 2010

Why I shouldn't write updates...

Because in my world the minute I hit publish everything seem to change.

Yep, our sweetie girl has another UTI :-( Crazy, I know! She woke fine, or so I thought. Here she is playing, I mean sitting up :-) with her brother right after breakfast.



But shortly after this she had 2 super yucky looking caths and was vomiting by lunch. She then became super lethargic and plain old sad. I was pretty sad too.

Thankfully, our pediatrician was able to get her in this afternoon and test her urine. Apparently, the initial dip was pretty bad and of course the fear with Annabelle is always dehydration during those first few days of waiting on the urine culture so they gave her a shot of Rocephen (sp?)

Obviously this is disappointing, but we are hoping that catching it early will help with the recovery time. She is scheduled for eye surgery next Thursday, November 11th so we really need her to be infection free very quickly.

As always, your prayers and positive thoughts are much appreciated. more cute pictures to come soon.

updates

I've been pretty bad with updates lately - sorry! Here's some of the latest medical news.

I wanted to let everyone know that the renal ultrasound that Annabelle had on October 12th showed NO hydronephrosis - YEAH!! This is really good news! We were just overjoyed to learn that the Ditropan and the every 3 hour cathing routine is working. For those that remember she had mild to moderate hydronephrosis on both kidneys just 3 months ago. She does still have Grade 4 kidney reflux (on a 1 - 5 scale with 5 being the worst) but we are hopeful that to will start to improve with the medicine and cathing routine. More testing to happen in December.

We went to Spina Bifida Clinic on October 19th. As expected Annabelle impressed them with all her new skills, happy smiles and fun new words like hi, bye, cat, dadda, momma, Jack, Ben, Baby Belle, bug, fish - some days she says more, other days lots less. She decides how much she wants to say and when :-)

Sitting up to be weighed at clinic for the first time - very big girl!

She was all smiles sitting on her daddy's lap

She showed off her standing skills for Peter (the man who made her braces) and for her Rehab doctor.

*fyi - she is wearing her AFO's under pants in this picture. I have lots to update on her progress since she got her AFO's and how they are helping her and also to give a clear picture of what she can and can't do (right now).

She sat in a chair playing for probably 20 - 30 minutes

She was having a great time trying out all the toys at the table


She had Ortho Clinic today (11-1-10) and all went went. He seemed overall pleased with how she was is doing. There was some discussion about possible tendon surgery because her feet pull upward, but he said that wouldn't be until she's closer to age 3 or 4. I'm choosing not to worry about that too much since she is only 15 months now. He also mentioned that he sees her potentially needing higher (above the knee) braces in the future, but felt what she has now is good for where she is at developmentally. Overall, I felt it was a positive visit. We will return in 3 months and will discuss the possibility of getting her a walker at that time.