Friday, February 24, 2012

9 months old and a well check

Addison turned 9 months old on the 20th!! 2/3rds of a year! Love you baby girl!! You are such a blessing !

Addison saw her pediatrician Wednesday for her 9 month well check. Her pedi is 'thrilled' with how well she's doing!!

Addie weighed 23 lbs and was 29 1/2 inches long. Her head measured right at 50.8cm having measured 50.4 at Dr. George's office earlier in the week. This happens a lot between different people measuring. So we're not worried. She's still on the same curve with her head, an off the chart curve but the same curve just the same. So this is good. She's staying on the same curve weight and height wise as well.

Addison got the green light to start all kinds of new foods so that is exciting. We can start feeding her meats, pasta, etc along with soft cooked veggies and fruits.

I did mention to Dr. N the possibility of a referral to a craniofacial doctor for a molding helmet. She and I both agreed that Addie's head shape looks good and she has minimal asymmetry issues so that's good that we're on the same page. I just wanted to double check. I've heard from our therapists and fellow hydro moms that it is hard to get insurance to pay for a shaping helmet or band after one year of age. So if it was needed, it would have been something we would  have needed to do sooner than later.

After our appointment, I took Addie and Jack to lunch at Chick Fil A. A first for me taking those two by myself to a restaurant. They both did great. Addie ate chicken for the first time and then Jack got to play on the playground while his sister took a snooze in her stroller.
Soon it was time to drop Jack off for his weekly speech class. Addie and I had some mommie daughter time for all of about an hour until Grayson got in from school.

Next week, we have Addie's eye appointment on Weds. Then Mom comes in next weekend to stay for a few nights. YAY! It feels like a really long time since mom came and stayed. She was here so much during the end of my pregnancy we all got pretty used to having her around - not to mention spoiled! It'll be nice to have her back for a few nights!

We have our next Hydro Angels Over Texas support group meeting on Sunday.  Addie and I are going by ourselves this time. Mom and Missy are gonna keep the boys and Adam has to work.  Jack's 4 year well check in on Monday the 5th in the early afternoon, then we'll go straight to Addie's 9 month portraits. Tuesday is Addie's tube surgery. All prayers for a safe, smooth, successful surgery are appreciated!

Tuesday, February 21, 2012

Neurosurgeon follow up

Adam and I took Addie to her MRI and follow up neurosurgeon appointment. Addie's MRI went well. The tech we had wasn't as smooth of an operator as the tech we had the last two times, but we made it through. Addison actually fell asleep during the scan. Guess it's old hat to her by now.

We headed upstairs and were called back very soon. Of course it helped that we were running late because the MRI place was running behind. After a quick set of vitals and measurements (Addie's head was 50.4cm - almost back to her birth size) and a health and history from the NP, it was time for Dr. George to come in!!

I had cheated and looked at the disk of images while we were in the waiting room so I knew there had been no change in her ventricles since her last scans in August and November of last year. Dr. George is very pleased with this fact. I asked him directly about the concerns Dr. Kurtzberg at Duke had... her head circ going up and the lack of change in her scans. He laughed and said he and JoAnn had that argument many times throughout the years. That he had told her, it doesn't mean anything. He said he's actually very glad that Addie's vents are stable after how badly she overdrained last summer.

As soon as he walked in the room, I handed him Addie. There's something incredibly sweet about seeing a man that cares for his patients as much as he does, a man that literally saved your daughter's life - not once but twice - holding your child. I think I shall ask him to hold her at every appointment from now on out!!

We don't have to go back for another three months. I scheduled Addie's next appointment the day after she turns 1 yr old. On the one year anniversary of her initial shunt surgery. Full circle. I pray we don't need Dr. George's services between now and then.

We left there and headed to lunch just the three of us. Melissa had the boys! They had a fun outing to Ikea while we took Addie to her appt.  Tomorrow is her nine month well baby. I'll be back with an update.


Fuzzy grins

On the way to her appointment
Addison with her amazing neurosurgeon, Dr. George

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Addison's sag and transverse MRI views. Stable vents!!

Thursday, February 16, 2012

Addison has started to commando crawl!

I was sitting here, talking to Addie's services coordinator yesterday when out of the corner of my eye I saw Addison reaching for the edge of her mattress and pulling herself to the edge! I squealed to her svc coordinator "Did you just see that?!" It was the first time I've seen her successful pull herself forward. She can spin herself in a circle, pulling herself to her right side (her stronger arm) and she can get to things that way, but has never pulled herself forward. Until yesterday. I watched her the rest of the evening and sure enough she did it again, this time on her gym mats that thankfully arrived yesterday. And she did it again. Only about six inches but they were six inches FORWARD using her arms to pull herself, going towards something that she wanted, with purpose!

I did not mention it to her developmental therapist today, on the chance that it was a fluke and partly because I was hoping she'd do it again today and her developmental therapist could see it for herself. And she did it !!! Multiple times. She pulls herself with her right arm and pushes herself with her right foot. Her left arm and leg are kind of along for the ride right now. But we'll work on them!!

She kept scooching forward to try to get her therapist's tablet computer. Oh she wanted it!! And instead of getting frustrated and getting fussy and pulling her arms up where she looked like a sky diver, she went for it and got it! After the therapist kept moving it out of her reach by a few inches of course. :o)

She was a very happy girl once she got to it!

Praise GOD!! I did not think I would be posting this so soon. I know she still has a lot of work to do... but don't we all? Through God all things are possible and Addison is and continues to be a testament to that fact!

I will do my best to get video soon!

This week has been blissfully normal... a few therapy appointments but nothing crazy. We are going to pick up my nephew this weekend which I'm looking forward to. He's trying to raise money for a mission trip to Panama and we are going to make him work for our donation! ;o)

Then MONDAY is the big day! I did find out through randomly reading that Addie's valve on her shunt doesn't have as small of increments as I thought it did. I.E. if Dr. George does decide to change her setting it would have to go from 110 to 70. There is no 100, 90, 80 etc. She was at a 40 before and majorly overdraining. So this has given me more food for thought regarding the possibility of adjusting her shunt. More to talk to Dr. George about. I am up to 7 questions for him. lol

I will be posting a lot in the next few weeks, I'm sure! Lots of appointments means lots of updates!



Monday, February 13, 2012

Addie's Ears

We saw the ENT last Friday and it all went pretty much as we expected. Addie had just finished her Augmentin 36 hours before her appointment and she still had fluid in her ears. No infection but the doctor noted negative pressure. Negative pressure on the ear drum creates something similar to what happens to ears when on a plane. I would assume because of this, her hearing is being affected and thus her  speech development. Dr. Z said they typically don't put tubes in kids this young but Addie's case is unique. Three ruptures in three months is not a good thing, and add in that she shows little to no signs of infection before it ruptures, we are moving forward with tubes. Dr. Z suggested we do the surgery at Dell Children's before I could even suggest it. So that was nice. I'll feel much more comfortable having her under the care of the hospital anesthesiologist then one at an outpatient facility. We are on the books for March 6th. Dr. Z agreed that seeing Dr. George before her surgery was a good idea, especially considering the possibility of a shunt adjustment. Then we didn't dare reschedule her eye appointment, so the next  available day is March 6th. It'll be here before we know it! It just happens to be the day Adam has been summoned for jury duty! So thankfully mom is coming down to keep Jack and get Gray to school, and I'll be flying solo for this surgery. After two brain surgeries, tubes feel like a cake walk, but surgery is still surgery so any prayers for Addison would be appreciated!!

Blessings ~


Wednesday, February 8, 2012

February is busy!

There is this commercial for Treasure Buddies where a monkey says "Bobby is dizzy!" and a dog says "You can say that again." So the monkey says "Bobby is dizzy!" again. Grayson and Jackson have been repeating those three lines over and over again. And in my head I hear the same exchange with "February is busy!" "You can say that again!"

We are blessed that for the most part our busy is all therapies and consults and not big problems. Addie's right ear drum ruptured again during the Hydro Angels Over Texas meet up on January 29th.  For those playing the home game, that's three times in two months. Twice in two weeks! I took her to her pedi the next day and our pedi feels like it is time for tubes. When Grayson went through this, we had to wait for six infections in six months. No thank you!! Addie goes backwards with her baby food feedings every time she starts antibiotics so it'll be good to get her ear issues fixed!

Then of course our follow up with Dr. George is right around the corner. I think about this too often. I'm very anxious to see her scans and hear his plan of action. Addie's head circ is up to 50.5 cms (what it was at birth). So she's consistently going up .75 cms a month. At this rate she will pass up my head circ within the year. So I feel like something needs to be adjusted. She's still showing no signs of shunt failure. Her soft spot is still very sunken and she still is hitting milestones. Though we have hit a slowdown with her physical development. She has weakness on her left side and it affects her upper body strength more than her legs it seems. So we are really working on transitions from sitting to tummy and getting her to weight bear on her arms while propped up on all fours using a pillow.

After her appointment with George, she has her nine! month well baby with her pedi. I pray we don't have to see her pedi before then. At her last sick check I mentioned to her doc that I had tried to get her into her ophthalmologist sooner than our May follow up and couldn't - she was completely booked. Her pedi was surprised that we had not gotten a diagnosis of strabismus yet. That she could even tell that Addie has strabismus. So she had her nurse call and get us in sooner. So February 29th we go back to the eye doc with photographic evidence this time. There is a chance that Addie will be rocking a pirate princess eye patch in the near future!

Of course all of these appointments are on top of therapies once or twice a week and Jackson's speech once a week and getting Gray to school and supervising his homework every night. Plus our PT has decided it's time to get Addie assessed by the OT now that she's old enough that her fine motor is developing on it's on and is not so tied into her gross motor development.

So yes. February is busy!!

We had all of my family over for the Super Bowl and to celebrate the boys and Raychel's birthdays. I will leave you with some pics from the party and this past week!
Trying Mum Mums for the first time! So exciting to see her interested in self feeding!
Making a silly face while PawPaw holds her!
Sleeping Beauty!

Grinning at MeMaw while I was trying to get the picture.

Raychel stealing kisses!
Dressed to party!
She LOVES her big brother!
First successful apples with rice cereal feeding!