Nine Month Check Up. Originally Posted October 1, 2010

Ali is more then 9 months old now, she’s growing and changing and learning and we are so proud of her.

I think back to when Madi was 9 months old and she was so different then from how Ali is now. I can’t help but wonder how things would be different if Ali didn’t have CS. Would she be sitting and crawling and going through all my cupboards like our beautiful little Madi did? Would she be able to polish off an entire Avocado in two minutes? Would she love sweet potatoes and hate peas? Or would she be a totally different from her big sister anyways? I also wonder about myself, Jason and Madi. Who would we be today? Would we realize how lucky we are? Would we realize the joy of the small steps? Would we value the things that we value today? I guess some things we’ll never know but I can honestly say that I have now gotten to a place where I don’t think of those things with regret anymore. I remember Madi fondly getting into mischief at 9 months and I just accept that Ali isn’t there yet. I firmly believe that she will get there, in her own time and that’s okay even if it takes years. Our little Ali is such a determined little thing that one day she will drive me nuts just like my beautiful Madi does. I’m sure of it!

So anyways, Ali went to the pediatrician today and he was absolutely thrilled with her progress. She has grown both in length and weight (16 pounds and 66 cm long) and for the first time has managed to grow a “typical” amount for the month! She is still small (10th percentile) but hasn’t lost any ground since our last appointment. The pediatrician seemed thrilled with her development in all areas. He asked if she reached for toys, could pass from one hand to the other, could vocalize and roll over front to back and back to front and I got to say yes to everything (although her rolling technique really stinks!). She’s still not sitting independently or making vowel sounds but hopefully that will come soon. The most amazing thing is that she’s really engaged with her environment these days. She attempts to roll over (hit or miss as to whether she makes it)when she wants to see what is going on behind her and she’ll roll from side to side to retrieve toys rather then just crying for help. She smiles and laughs at Jason and Madi’s craziness rather then crying and when her eyeballs cooperate she watches them play. She is becoming an amazing little person and we are so happy for her and for us!

We are going to be going to a rehabilitation hospital to have an assessment done (Physical Medicine) just to make sure that we are covering our bases but at this point we don’t expect that any serious problems will be discovered. We would like to have access to the seating clinic at this point! We are also going to really concentrate on the tone in her legs, bum and abdomen as that seems to be her weakest area right now. She still doesn’t really have any strength in her legs.

Anyways, it’s been a good day. As I was leaving the Pediatrician’s office today the doctor told me to aim high and that’s what we’re going to do.

Tumor Screening Day. Originally Posted September 22, 2010

To be blunt, I think it sucks that I have to get my daughter screened for malignant tumors every three months.  Since that’s what we have to do then I guess we’ll just try to be thankful that we have the opportunity to catch these tumors early if Ali gets one.

Ali had her screening done today and it was all clear, so for the rest of the day, we can take comfort in knowing that there are no tumors. Then tomorrow the worry starts all over again.

“We” Finally Gained Some Weight. Originally Posted August 30, 2010

Ali got weighed today and after sitting at around 15 pounds 4 ounces for a couple of months, she finally gained some weight and she did an excellent job of it by gaining 7 ounces in two weeks!!

Not much else to report, Ali is booked for the second surgery of her G-tube insertion on October 25th. It’s just a quick little procedure but it’s still done under anesthetic. She is having a MicKey inserted and then the G-tube will be complete!

 

A Long Overdue Update. Originally Posted August 22, 2010

I just realized that I hadn’t updated in a long time so I thought I would write a quick one.

Since I last updated we’ve been enjoying our summer with our two little girls. We’ve been camping three times and are planning another trip later this week. Just for the record we don’t camp in a tent (we’re not crazy!!!), we camp in our fifth wheel with most of the comforts of home which is perfect for all four of us. Ali loves camping. She loves to lay in the trailer on the bed in the master bedroom and stare at her feet or lick her toes and hands. I think her favourite part of camping is laying in a camping chair on a nice soft blanket under the awning to have a nap in the breeze. We recently went camping in Jasper with my parents and my sister and Brother in Law.  A great time was had by all.  Madi went swimming with Daddy and Grandpa and I tried to get Ali into the pool but she didn’t think that was such a great idea so she settled for a bath instead! Ali was a good girl and managed not to get too upset in the noisy restaurants which is a major improvement for her, noise used to always lead to a very sad baby. Sunlight is still a big issue for Ali but she is becoming a little less sensitive to the light and we have high hopes for her next summer!

Ali is working really hard to build up her muscle strength. She is doing really well with her “exercises” and we have seen lots of improvement in her tummy time and her head control. We are working towards a goal of sitting on her own by her first birthday.  It’s a lofty goal but we like a challenge!!!!

Ali loves to lay in her crib and listen to “her music” (fisher price magic aquarium). She actually seems to sing along and move to the music and god help us if it turns off before she’s ready, we better be in there quick to turn it back on! Ali has also recently learned the value of a good book. She loves to look at picture books and frequently reaches up to graband touch the book and pictures.

Feeding is still a huge issue for her. She is still not gaining any weight despite a calorie increase and the addition of a supplement to her diet so we are going to have to try something else I guess.

So all in all, Ali is doing really well aside from the feeding issues!!!! She’s an amazing little girl and we adore her. She is so social, I think she’s going to be just like Madi.  We might be in trouble!!!!

 

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.