Monday, December 1, 2008
Big news is Addy went to see Dr. Bowman - her Neurosurgeon. We were going for the results of Addy's MRV that she had to make sure the dialing up of Addy's shunt made her ventricles a bit larger (which will help her shunt stay in place). Dr. Bowman always starts the visit by testing Addy's tone. Just like the last visit - she was thrilled. No decrease and no increase in tone - it's exactly where it needs to be. She let us know that the MRV was great - the dialing up of the shunt did exactly what it needed to do and her ventricles are back to where she wants them. Dr. Bowman proceeded to tell us she wishes she could see Addison every month because she loves seeing her however at this point - unless Addy has any issues with her shunt - we don't have to go back for another SIX months! Dee Dee brought up that Addy's physical therapist and Dr. Kershaw had asked us to mention a possible helmet to help with Addy's head shape to see if it would improve her neck strength. We had brought this up to Dr. Bowman before - wondering if Addy would need a helmet - however Dr. Bowman saw no reason for it and she continues to have the same thought. She feels it would be strictly cosmetic and at this point in Addy's physical development, you probably wouldn't even notice a change in her head's shape nor would it "help" her hold her head up any quicker. In fact, Dr. Bowman said that Addison's head shape is actually not so much a result of laying on the sides (toaster head) but instead that her brain shape is what has molded her head shape. She said she thought Addy's doing GREAT with everything and being that Dr. Bowman doesn't sugar coat, her thoughts mean a lot to us. Dr. Bowman was most excited by how well Addison is doing eating by mouth. She's impressed that Addy is learning to drink from a cup. She actually said she was really proud of her.
Addy has an appointment with Dr. Stack - her Neurophysiologist - on the 10th. We did call her today to inquire on giving Addy her Phenobarb via her g-tube with water as opposed to mixed in food. Addy absolutely HATES the taste - who wouldn't?! We also let Dr. Stack know that Addy is still having a few seizures so she decided to up her medicine because the goal is for Addy to have NO seizures at all.
Dee Dee and I don't really have anything new going on. Work is REALLY busy right now. We definitely can't complain. We're happy to say that our 10 year anniversary is Thursday. Granny Nan and Auntie Shelly have agreed to watching Addy overnight while we celebrate in the city on the 13th. We're just going to do lunch and get pedicures, hang out at Navy Pier for a bit. We're going to stay the night at the W on the lake. It's going to be our first official night away from Addy since she's been home. YIKES! :o) I can't guarantee we won't pack up in the middle of the night and come home because we miss her!
Thanksgiving was great! My Aunt Shirley has been here for a week. My mom and Shirley cooked an amazing Thanksgiving lunch. We just hung out at home all day and relaxed. Dee Dee and Shelly went shopping at midnight to the Huntley outlets - couple of loons. We had a four day weekend so we did a lot of chilling around the house. Annie came to visit on Saturday night. Sunday we went to brunch then went to paint some pottery! It was a lot of fun!
OH - before I forget, my Mom's friend hung Christmas lights for us this year - it looks awesome. Definitely got us in the holiday spirit. We've started decorating and actually went to get our Christmas tree this evening!
I guess that's all there really is to report. Happy Birthday to Grandma Rose this week!
Sunday, November 16, 2008
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!
Sunday, November 9, 2008
Saturday, November 1, 2008
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.