Little Miss Babbles

This has been a really uneventful week for Addy so I thought it would be fun to just post a video of our girl chatting away. :o) She has a couple doctor's appointments this week so it'll be a more informative blog next time! Have a great week!

Love to all!

Addy's 1st Birthday!

And of course, Happy Birthday to our precious boy, Riley. We love you.

Our Little Pumpkin

Yes, I know. It's been a VERY long time since our last update. Things have been crazy busy at work and when we get home all we want to do is snuggle up with Addison. Weekends are spent the same way. We still can't get enough of our little peanut.

Let's see, work is the same for both of us. A LOT more busy lately as my new team has gone to a new system. I'm also in the process of implementing three new accounts for my team. I barely have time to breathe at work. I can't complain. I'm incredibly lucky to have a job that is stable and not in jeopardy with the way the market is right now. Dee Dee's department is status quo - as usual. My Mom got a job at MetLife in September and has moved in with us. It's nice having her here as she's hysterical and we enjoy having her around.

Moving on to the reason you visit - Addison! She is doing FANTASTIC. She's growing like a weed - she's officially 16.5 pounds! She's getting a lot longer as well. It's hard to believe she's going to be a year old in 7 days. Dee Dee and I keep commenting that this has been the quickest year of our lives. Let me give you a little update on all of her therapies and doctors visits:

1. Speech Therapy. Gail is incredibly impressed with how Addison is doing. Addy eats baby food by mouth 3 times a day. We haven't eliminated a formula g-tube feeding quite yet but we anticipate it's coming shortly. Addy has quickly graduated to '2nd' foods and is doing really well. Her favorites are sweet potatoes, squash, pears, carrots and peaches. She's not a big fan of green beans or applesauce. This week she's going to have a bit of chicken. Gail has also decided to eliminate trying to get Addy to use a bottle. Addison is not a fan of any nipples that we have tried. Instead, she is learning how to drink from a cup! Gail dilutes pears or peaches. Addy is doing awesome with the cup. We're now focusing on getting Addison to move her tongue to each side of her mouth in an effort to teach her to chew. Her teeth have not come in yet however you can see the little white spec getting ready!

2. Occupational Therapy. Robin is super pleased with how Addy is doing. Addy still does not hold her head up but she is definitely making improvements. She has a tendency to hold her thumbs inside her palm like a fist so Robin is going to be designing some thumb splints to keep her thumbs on the outside. She had some temporary ones that worked pretty well. Our goal is still to focus on neck control but she's moving in the right direction!

3. Physical Therapy. Delores is really happy with Addy's tone in her muscles. We've all worked really hard to keep her tone where it needs to be. Delores even commented that she could feel some muscle definition in Addy's legs which is really good. It's funny that Addy can't hold her head up yet if you lean her against you for support she can stand without assistance. Addy has recently been reaching for more toys. Both Delores and Robin have some to the conclusion that Addy doesn't really like plastic toys but instead prefers fabric. Addy is also starting to realize that some of the things she plays with makes noise and that by her touching them - the noise happens.

4. Opthamologist - Dr. Yoon. We saw Dr. Yoon on Monday this past week. He's SO happy with how Addy's vision is. He indicated that her prescription has gotten a bit worse however her vision (what she sees) has improved dramatically! Before, Dr. Yoon was measuring Addy's vision at 20/27,000 as of Monday he's measuring it at 20/1,000! She's doing really well with tracking objects. She got fitted for a new pair of glasses. Pink ones this time! Dr. Yoon has also indicated that the crossing in her eyes he had seen before has improved and has no intention of doing surgery as he feels that it will continue to correct itself. He's not going to follow her as closely - we won't see him for 3 months.

5. Pulmonologist - Dr. Lestrud. We saw Dr. Lestrud on Monday as well! He's really pleased with Addy's growth and how she's been doing. He indicated she had a bit of a cold however it was upper respiratory and he's just having us give Addy additional puffs of her Albuterol. We won't see him for another 4 months as he has no intention of messing with her medications or oxygen until after the winter. Addy's blood tests for her medication management have come back perfect!

6. Neurosurgeon - Dr. Bowman. We saw Dr. Bowman a couple of months ago. She was happy with Addy's tone of course and indicated that her ventricles have gotten a little smaller than she wants to keep them at. Smaller ventricles can allow Addy's shunt to move around which can in turn cause a shunt malfunction. She dialed up Addy's shunt to allow a bit more fluid to fill in the ventricles and Addy adapted really well. We got an MRV on Monday and will be going back to Dr. Bowman on November 13th to get the results.

7. Neurophysiologist - Dr. Stack. Yes - someone you have not heard of. This is Addison's seizure specialist. Addy was diagnosed with Epilepsy two weeks ago. She did not have a convulsive seizure however on a Sunday morning I was laying with Addy and noticed she was doing a little 'twitch' with one of her arms and would have a facial twitch at the same time. This would happen about every 20 seconds for about 4-5 times. Dee Dee called Dr. Bowman who asked us to go in for an EEG at Dr. Stack's office. Dr. Stack is the Medical Director for the Neurophysiology department - the best of the best! Addy had her EEG then Dr. Stack came in to examine her. She commented that Addy's tone was awesome and that for all Addy has gone through - she looked fantastic. She then let us know that after reviewing Addy's EEG that she noticed seizure activity. She decided that with all of the medications Addy is on that Phenobarb would be the best option. That night we started Addy on her medication which is a pill that we crush and mix it in with her baby food. Two days later - we already noticed a difference. Addy is much more engaged with things, active and finally - she's begun babbling. More than babbling - she's a little chatter box! We called the doctor and she let us know that Addy was probably having non-visible seizure activity and now that her medication is 'calming' her brain activity Addy's able to focus on herself developmentally. Of course we were upset that Addy has yet another diagnosis but it wasn't something that we weren't necessarily prepared for. We won't know if it will remain the same 'twitch' type seizures (when/if she has them) or if it will escalate to convulsive seizures. The purpose of the medication is to hopefully stop any seizure from happening. :o)

That's about it for medical updates. Other than that, we've been having fun as a family. We recently took Addy to the pumpkin patch. She didn't quite know what the heck she was doing there. Haha. Addy dressed as a pink bunny for Halloween yesterday and went Trick or Treating at our neighbors where she got a Reese's Peanut Butter Cup that Mama enjoyed. Addy's also enjoying going to Kindermusik on Saturday's with Mama. Auntie Shelly, Granny Nan and I have all joined. Addy sure loves music. Her other new love is Elmo. She can't stop staring at him.

One thing I've realized in the past year is how much I enjoy being a Mother. I never thought it could be this wonderful! Addy is my life. She makes me smile all the time. Her strength to overcome all of her obstacles amazes me every day. We love spending time with her - we've been so blessed. I miss Riley more and more every day however knowing that he's by his sister's side, it definitely comforting.

A note from Miss Addison...

Dear Family and Friends,

I know my Mommy has been busy so I thought I would send a brief note letting everyone know that Mommy has officially adopted me as of Friday, September 12th! Mommy's attorney called her at work today with the great news! She called me right away to tell me because she was SO excited. I was really excited as well! I will be getting a new birth certificate with Mommy's name on it and everything! Well, I'm off to play! Just wanted to share the great news!

XOXO,

Addy

Baths Are For Babies

Addy had a fantastic week last week. The big news is Addy took rice cereal - from a spoon! The Speech Therapist said Addison did fantastic. She doesn't take a whole lot but it's something new so it's to be expected. She taught us how to open her mouth by placing our finger on her chin, put the spoon in and then close her mouth with the same finger on her chin. Addy does lots of smacking as she's getting used to the texture of the cereal. She did such a great job during Speech Therapy that Gail gave us the okay to do it once a day with Addy! We've been doing it since Thursday and Addy is doing awesome. The most she has taken via mouth was about 15 cc's which we're assuming is pretty dang good. We're so proud of her. It definitely makes Dee Dee and I a bit nervous while we're doing it because the last thing we want is for her to choke but she's doing great. This Wednesday we get to try out carrots! I'm hoping each week we get to introduce something new. Not sure if I mentioned in previous posts however Dee Dee and I have decided to make Addison's baby food. We knew from the start that we wanted to have Addy's food be organic however we were just going to use the Gerber Organic premade food. After reading that the shelf life of baby food is about 2-4 years, we decided the healthiest option for Addison was to make our own organic baby food. We bought a book of recipes and we are actually really looking forward to it! We figured we'd make the week's worth of food (when she gets to that point) on Saturday or Sunday of each week.

The other cool news is April, the Physical Therapist for the study Addy is in, came on Friday for her 6 month (adjusted) examination of Addy. She was thrilled with how far Addy has come. She said although Addy isn't holding her head up completely quite yet, she can definitely tell the difference from the last time she was here. She also said Addison was a lot more active with this examination and incredibly responsive to auditory prompts. Addy's regular Physical Therapist, Delores, came to check out the examination as she hadn't heard of it and wanted to see it first hand. All of us noticed that Addy is using her left leg a lot more than her right so we will be working a lot more with her right side. We won't see April again until Addy is 10 months adjusted so it'll be REALLY interesting to see how Addy is doing then!

As I mentioned in the previous post, Addy had her CT scan done and we got in to see Dr. Bowman (Addy's Neurosurgeon) on Thursday. For those that have been following our story - Dr. Bowman isn't the most personable of all of Addy's physicians. Don't get me wrong - we wouldn't want any other doctor - Dr. Bowman prides herself on being amazing - and she is. However, the fact that Dr. Bowman isn't that personable made pretty much the first thing out of her mouth more meaningful... One of the first things Dr. Bowman does is checks Addy for muscle tone. One of the main signs of Cerebral Palsy is increased muscle tone (almost stiffening) or decreased muscle tone (almost limp). Addy's Physical and Occupational Therapist (as well as previous visits with Dr. Bowman) have revealed increased tone in Addy's hamstrings. When Dr. Bowman finished her tone evaluation she turned to us and said, "You guys, she has like no increased muscle tone!" To hear that from her made us so happy. She went on to say that Addy looks fantastic and she's very pleased with her progress. She showed us Addison's CT scan which showed her ventricles are a bit smaller than last time. She decided to dial up her shunt setting a bit to allow a little more fluid into the ventricles to get them back to the size she likes. Addy has tolerated the new shunt setting as if nothing has even changed. We will see Dr. Bowman again in about 2-3 months and this time will be getting an MRV (Magnetic Resonance Venograph) instead of a CT scan. Reason being is that Addy will need brain scans every 2-4 months to keep an eye on her ventricles and shunt. The MRV uses no radiation which is obviously a lot healthier for her. Definitely a successful visit to the Neurosurgeon!

Oh! Before I forget, Addy is now 14 1/2 pounds and 24 1/2 inches! Such a big girl! :o)

We've finally come to a solution for Addy hating her baths. We decided to try holding her in the shower. She LOVES it. She just looks around and actually opens up her hands to feel the water. Maybe she will like baths more once she can sit up - until then - baths are for babies not big girls like Miss Addy.

We've got a pretty busy month this September. Garage sale on the 6th, Granny Nan's birthday is the 7th, Dee Dee's tonsillectomy on the 11th and a trip to Minnesota for Cousin Sarah's wedding on the 27th. The biggest news for me is my adoption of Addison will be official on September 12th. Please keep your fingers crossed the final judgement goes through without any delays! :o)

Love to All!