Saturday, February 21, 2009

Teeth Are Overrated

So, I figured since I'm having a little insomnia this morning, what better time to update the blog? I've been horrible at keeping this up to date, I'm so sorry!

Addy has been doing amazing the past couple of months. She's now 18.2 pounds and 28 inches. She's long and skinny. Definitely don't know where she gets it from. LOL Her hair gets longer and thicker by the day - it's a perfect mix of brown and blond - too cute. We've started giving her little "palm tree" pony tails with her bangs. We've definitely had some cabin fever over the past couple of months. RSV season is WAY too long! We're doing our best at keeping Addison in the house and only taking her out when she has a doctor's appointment. Our Pulmonologist told us at our last appointment before winter to not be surprised if Addy ended up in the hospital a couple times this winter and that this will be her toughest one. If this is her toughest winter - we're good to go. Addy has had one cold all winter thus far (knock on wood!). Her cold consisted of a runny nose and a little cough - lasted about a week and a half. She never whined, nothing. Such an awesome baby I tell you. Well I'm sure you're all wondering the latest with Addy's therapies and appointment updates, so here goes:

Speech Therapy: Addy continues to do well with eating by mouth. Her cold did provide her with a bit of a setback though. No one wants to eat when they have snot running out of their nose and down their throats. She's slowly progressed back to where she was by eating about 2-5 tablespoons of baby food per day. Prunes really seem to be her favorite. Followed in a close second with pears. We've started giving her other things in those little mesh bags as well. We've put bananas, oranges, etc in them and she really seems to enjoy it. Her all time favorite though is pickles! She LOVES them. Addy did recently switch from her formula to Pediasure. Pediasure is now her primary source of nutrition until she is able to eat by mouth for nutritional value.

Occupational Therapy: She's doing really well with her OT. She's begun doing more grasping of her toys and reaching out for them. She really gets into her cause/effect toys. Robin is pretty pleased with her progress.

Physical Therapy: Delores continues to work on Addy's gross motor skills. Addy is still not holding her head up. She's definitely made progress but her upper body is just not as strong as her lower portion. Plain and simple - Addy does things when she's ready. I just hope she's ready soon! All of her therapists have said that they think Addy will really excel once she keeps that noggin of hers up!

Early Intervention: I'm not sure if we've discussed EI with all of you however EI is basically all of the therapies above that Addison is receiving. We had our second EI meeting a couple of weeks ago where all of her therapists along with Addy's case worker meet with us about how Addison's been doing, what their goals are for her and also determine what tools they need to help Addy get to where she needs to be. During the meeting, each therapist provides us with a report of Addy's improvements since the last meeting. Addy's first meeting was shortly after she came home. She has made improvements with each therapy which is awesome. Delores (PT) still has Addy placed in a 0-3 month category but this is primarily because of the issue of Addison not holding her head up. When Addy came home she could not move her head from side to side while laying down and she now does it with ease. The big success story is with Gail (SLP) who has placed Addy in a 3-6 month category with her oral skills. She even hit a 6-9 month on a category. All in all, Addy continues to improve. Although it's slow, it's an improvement. The therapist have decided on a few things they'd like to get for Addy. One is a Benik vest. Addy has been using a 'loaner' Benik vest for about a month. It's a vest that provides trunk support so Addy has to use her upper body muscles more. It's awesome. If you 'Google' it - you can check out a picture. They've also recommended a Wombat chair. A Wombat chair is a positioning chair that provides stabilization and sitting support. It will allow Addy to sit unassisted. It's kind of like a stationary wheelchair. She also may be getting AFO braces. Delores has mentioned a bit of tone in Addy's feet which we continue to work on however the AFO braces will help Addy keep her feet flat instead of curving. The most interesting part of our recent meeting was when we asked what happens after Addy's 3 years with EI is complete. EI services are provided until a child turns 3. We almost fell off our chairs when our case worker let us know Addy would then go to preschool. It's hard to think of our little 1 pound 9 ounce nugget going to preschool! Addy will actually be picked up on a school bus and taken to school where her preschool will actually consist of therapy all day! The school apparently takes over Addy's therapies. Both Robin and Delores did let us know that they feel a wheelchair will be in Addy's future. They think that Addy will most likely be just learning to walk around the time she'll attend preschool so it will be more of an issue that Addy will not have enough stamina to walk around school. We're definitely excited to see how Addy progresses with EI this year.

Dr. Stack - Addy's "seizure" doc. Addy continued to have seizures after being put on her Phenobarb. It was decided to put Addy on Topamax which is a common migraine medication for adults. Addy has not had a single seizure since going on the Topamax! Dr. Stack is slowly taking Addy off of the Phenobarb at which point Topamax will be what Addy stays on as long as it continues to be beneficial. Only long term side effect with taking Topomax is a potential for Glaucoma which is why it's awesome that Addy sees Dr. Yoon quarterly.

Dr. Yoon - Addy's "eye" doc. We actually saw Dr. Yoon yesterday. Addy's prescription did not change which is a definite bonus for us because glasses are damn expensive - especially for kids! We were a bit surprised to hear that Addy's vision will not be getting better. Addy is extremely near sighted. She can see well with her glasses but without she needs to have things right in her face to see them. Dr. Yoon also indicated that Addy is still at risk for retinal detachment so he will continue to monitor her closely. He also let us know that he would like for Addy to be seen by a "low vision" doctor. Lucky for us - she's new to the staff at Children's and was shadowing Dr. Yoon yesterday! She's going to be going over Addy's chart and contacting us for an evaluation. Addy will then participate in low vision therapy - basically PT for her eyes! This will help her not have to 'strain' so much.

Dr. Bowman - Addy's "brain" doc. No updates here! Shunt is working awesome! KNOCK ON WOOD for sure with this one!

Last but not least, Addy had another NICU follow up appointment last week. It's basically to check to see where Addy is developmentally. Addy has unofficially been diagnosed with Cerebral Palsy. This was not a shock for us. Cerebral Palsy is such an umbrella diagnosis. The reason it's been unofficially diagnosed is because yes, Addy has Cerebral Palsy due to her delays however it's too early to tell the type or how severe. Regardless of the outcome of her diagnosis, we are SO proud of Addy. She continues to prove all of her Neonatologists and Neurologists wrong - which I know makes them happy, as it does us. :o) More to come on this topic as we learn more!
I think that's it for the updates on Addy! To sum it all up - she's a miracle and is the coolest kid I know! :o) She continues to amaze me every day. I am SO honored to be her Mommy.

As for Dee Dee and I, things are pretty much status quo. Only new news is that I decided to step down from my role as a manager for MetLife. I'm still working there, I just went back to my position I was doing prior to my promotion. In a nutshell, I wanted more time with my family. I was working holidays, weekends and long hours during the day. Although I loved my job, I love my family more and they will always come first. :o)

We've decided to spread out our vacation this year and take little trips here and there. We'll be going to Atlanta in May to see my brother, Matt and his family. We're thinking of taking some long weekends in Minneapolis, Des Moines, Wisconsin Dells, Door County and still looking for some other places to go to. We were going to go to Vegas again but we decided we just can't be away from our girl! On the way to Atlanta we will be stopping in Nashville to visit one of Addy's NICU nurses, Michelle, who moved there shortly after we left. We're so excited to take Addy to some new places.

The last thing I wanted to bring up is that we will be walking in the 2009 March for Babies on April 26th. We would love for anyone to join us in the walk or if you can, to sponsor us. Think about how the research that March of Dimes has done that has allowed Addison to be a part of our family. Only a few short years ago, Addy wouldn't have stood a chance with her extreme prematurity. Please think about donating today, even if it's only a $1. Here are our webpages for the walk: <--- Dee Dee's <--- Greta's <--- Addy's

Well, I think that's it for our most recent update. Don't be surprised if it's another month or so before I update again. Once RSV season is over, you'll be seeing a lot more! Lots of love to all!