Bittersweet Goodbyes and a Medical Recap

Stella has been a busy girl lately getting back into the routine of weekly physical, occupational, and speech therapies and spending lots of time with family. We have recently been to both the cardiologist and the neurologist for routine check ups. Her echocardiogram with the cardiologist was great and he continued to describe her tricuspid valve leak as "normal" and the pressure in her pulmonary veins was lower on both sides. Their only concern was her weight (Stella lost almost one pound since they had seen her one month prior.) Her neurology appointment was a follow-up to our recent hospital visit for seizures. We have more than doubled the amount of Keppra that she gets each day and we've added on Topamax and have only seen one seizure episode since these med changes. Her neurologist wants to continue with this routine and see her again next month unless we see any changes before then - but hopefully this amount of medication will keep her seizures under control because we don't want to have to keep increasing her medication. We have also noticed a decrease in her vomiting and it leads us to believe that the vomiting is related to the seizures. At her neurology appointment she had gained 6 ounces in 4 days so hopefully with her throwing up less we can get her back on her growth curve.

In 8 days we have a bittersweet goodbye as my brother, sister-in-law and 3 of Stella's cousins leave for South Africa for 2 years. We are so proud of the brave decision they have made for their family to serve the world in South Africa but we are sad to see them leaving. The past few weeks we have been enjoying as much cousin time as possible. Stella and Everett are only a few months apart and Stella loves to watch her little cousin move and play (he is walking running at 10 months and it is great for her development to interact with him and learn from him.) Reagan and Stella are the only girls on my side of the family and Reagan loves to share all of her favorite girly things with Stella.

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This morning our church brought Scott, Amber, Reagan, Garrett and Everett up to pray for them as they get ready to make the biggest move of their lives. If you would like to continue to follow their journey and support them in prayer you can find out more here at their website. They have played a big part in our lives especially when we needed support in the hospital on some of Stella's toughest days. It is going to be a long two years not to have them a few miles away where we can get together for play dates or dinner at anytime but I am so thankful for the opportunity to support them while they go through this change in their lives just like they were there for us as our life changed. 

Words I Didn't Expect to Say to Stella...

Sorry it's been awhile since I've posted but in the midst of moving houses, working more hours and David going back to school, there has been limited free time. We are finally settled in and starting to figure out our new schedules. 

Stella is doing great sleeping in her new room and we have eliminated her 9 pm tube feeding by dividing the last amount into her 4 other scheduled feedings so she is actually going to bed earlier (and waking up earlier too.) I am working mostly EARLY mornings (think 4 am - 10 am) and when I get home from work David goes to class. Stella is continuing to receive Occupational Therapy, Speech Therapy, and Physical Therapy each once a week and we work with her each day on the things that we have learned from her therapies.

While we were in Tucson to see Marsha Dunn Klein she introduced Stella to Mum crackers (similar to Puffs but a long wafer that's easier to hold) and Stella loved tasting the crumbs and even taking little bites. We have continued to let Stella explore with the crackers and she now eats almost a whole cracker in one sitting. Yesterday while she was eating her cracker I actually had to tell her to "finish what was in her mouth before you take another bite." This is such a normal mom of a toddler thing to say but if you told me a couple weeks ago that these words would be coming out of my mouth so soon I would have never believed you!!

STELLA LOVES EATING HER MUM CRACKERS! She went to town on this vegetable flavored crispy cracker and loved being able to hold it herself and take bites. She would get frustrated if I tried to help her. (Mia also loves that Stella is starting to eat things and feed herself; she stayed right by Stella to watch for any scraps she might be able to get.) It was such a great eating experience and it is a big step in the right direction of getting rid of the tube. We know that we still have a long journey from where we are to the point that we can be tube-free. Marsha described Stella as being in the "exploration" stage which means that any time that Stella is open to exploring new tastes, textures, and eating experiences that we need to encourage her to do so. However; Stella is also still a very cautious eater and there are many times when she is not open to new foods entering her mouth - so we have to do a balancing act of helping her to try new things but recognizing when she is not open to exploring so we don't take any steps back. 

The next few months will be a lot of small taste sessions like we had yesterday with the cracker, and hopefully by 2013 we'll be writing about Stella eating a complete meal by mouth instead of a complete cracker!