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!

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.




Blessings.


Aimee

Fuzzy grins

On the way to her appointment

Addison with her amazing neurosurgeon, Dr. George

<>   <>    

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

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!


Blessings~

Aimee

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 ~

Aimee

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!

Hydro Angels meet up

We attended the first Austin area Hydro Angels Over Texas (check them out here) support group today and it was awesome!! We were one of ten families that were represented. The founder is an amazing woman that has hydrocephalus and is still able to lead this wonderful organization in support of families and individuals all over Texas.

We even had the awesome added bonus of meeting a family that lives in the same community as we do!! How incredible is that?! Their son is just two months younger than Addie (TO the day!) and is a CUTIE! I look forward to getting to know this family even better and watching our kids grow up together and NOT alone in their condition. God is GOOD!! It was such a wonderful experience to talk to a family that not only knows hydro speak but uses the same doctors!

Today was a GOOD day!

I am now officially signed up as a hydro angel to offer support to any hydro family that needs it!

Now I'm kicking myself for not taking any pictures... hopefully we will have more opportunities in the future. Next group meeting is in March.

Eight months and an update!

Miss Addison turned eight months old last week. It was a very special day in our household. She shared her eight month birthday with her brothers 4 yr and 9 yr birthdays. 20 is a very special number in our house!

Big girl in her little bitty chair!

Birthday boys!

Addison is sitting completely independently now per her PT goal. It's hard to say when she started this officially. She could sit up for a few seconds before Christmas.... and I have some cute pictures of her sitting under the tree to prove it. By New Year's she was sitting up by herself for minutes at a time, on a mattress pad so if she does lose her balance she won't bonk her head. Now she can sit for 15 - 20 minutes without falling over. So we have removed sitting up from her PT goal list.


She's also rolling all over the place. She can now roll over front to back and back to front. We are working on getting her to roll both to her left and right side. Her next goal with her PT is crawling which is an amazing thing to think about!!

She loves her exersaucer. She bounces and spins and plays with the toys. She has started noticing herself in the mirror which is wonderful! She is now sitting up during her baths instead of lying back which makes bathing her by myself much easier. She still isn't big on baby food. We're making baby steps with solids. I do wonder if she has some kind of bad association after all the times we had to force the INH down her. Hopefully this will fix itself in time. I did have her PT feed her the other day to check for any issues that would be related to hydrocephalus. Her PT doesn't feel like it's muscular. If anything it could be sensory, but she does take some food, she just doesn't like it much. We may need to get an OT assessment in a few months but we're not in a hurry. Lord knows she's not lacking for caloric input. She weighs nearly 23 lbs! She's outgrowing her 9 month clothes. I have boxed up the majority of her six month outfits. I have saved a few for sentimental sake. But it's hard to get sad when your baby is growing and thriving when you have a situation such that we do.


In medical news, Addie has had her second double ear infection. Boo. She's such a tough cookie. She shows no signs of being in pain or being cranky or out of sorts, and the only way I've known anything was up both times was dried blood in her ear when she wakes up. Her right drum has perforated twice now. Her pedi, Dr. N, said the perfs are tiny pin prick size holes which is good I guess... but I do wonder if there is a connection to her hydro. It's her right ear which is the worse side hydro wise - where there was the most fluid and is where her shunt was placed. Guess time will tell. I won't be surprised if we end up with tubes in a few more months though.

In more hydro related news, Addie has her next neurosurgeon appointment coming up in less than a month.  I believe I posted earlier about my concern that her ventricles haven't gone done much in size since August. Her nsg has ordered another MRI which I'm very happy about. Since it's a fast act MRI, it's a quick in and out scan with no sedation.  This will allow us  to talk to her surgeon about the scan,  instead of waiting and seeing if we receive a phone call a few days later when he has a chance to review it. If her vents still haven't gotten smaller,  I'm very curious to see what Dr. G does about it. On one hand, she's still doing remarkably well! And I'd hate to mess up a working shunt. On the other hand, we want her brain to have a chance to expand while she's still in the brain growing stage. I'll update the blog as soon as we know what the course of action (or lack thereof) is.


Her eyes are definitely crossing more. Duke's report even diagnosed the strabismus. So it was missed by her ophthalmologist. I tried to get her in sooner but it would mean switching docs to one I haven't heard good things about so we are going to leave it alone and wait til May to see what her doc wants to do... patching first.. surgery... Botox injections, etc. I WILL be taking photographic evidence in with me of her eyes not being aligned.


We enjoyed our first Christmas as a family of five and celebrated New Year's Eve low key at home. Which was nice. It was a bittersweet night for me, saying goodbye to 2011. What a year for our family. Definitely one I will never have to stop and wonder... now where was I in 2011? What was going on in my life in 2011? It's a mile marker kind of year in the journey of life.

Addie with my neice - Christmas Eve

First family picture since Addie was born.

The boys are doing well. Jack is proud to be a big ol 4 year old and Grayson slid into 9 like he's been there for months already. School is half way over... already!


We don't have a lot coming up, which is nice! We do plan to attend a local hydro support meet up this weekend here in town.  Spring break will be spent at home this year, working on house projects. We've been thinking about a garage sale!! I don't know if we're that brave but a lot of baby things are being outgrown (Praise God!) and since we are done in the baby making department, we no longer need to store them for future use. Plus we have a lot of furniture we aren't using taking up a bunch of space in the garage.

Believe it or not, we are already starting to think about summer vacation destinations. One vacation will be wrapped up with Addie's third and most likely final stem cell infusion. We are driving this time and plan to make our way through Nashville on the way to Raleigh to meet up with a bunch of hydro families I've met through an online support group. Very excited about this! We plan to detour back through Atlanta on the way home to visit Adam's family. Hopefully we can take another road trip to Florida toward the end of summer to visit Adam's mom for a longer more relaxing vacation... and the fact that Mimi lives by the beach is a big BONUS! I look forward to getting pics of Addie in the sand! It will be a full circle kind of trip...as the last time we visited was the week before we got Addie's diagnosis of hydrocephalus. I pray and hopefully plan that we can return to the beach as a family of five this summer!

I feel this blog is lacking in updates but rest assured this is a no news is good news blog! I  started the blog intending to update on Addie's medical journey and Praise the Lord she's been doing so well there hasn't been much to update. I will try to do better in making it more of a blog about her wonderful amazingness and less about just the medical stuff!

Until then!

Aimee