Jacob had his swallow study about 3 weeks ago, and the result is increased thickener. They were unable to get great results, since he figured out their barium trick and refused to drink more than a few sips each time. However they did find a few penetrations during the time he was drinking the nectar thickened bottle (which is the consistency he was on). Based on that and the fact that he has had increased respiratory infections, they decided it was a good idea to increase the consistency to honey.
We also saw a nutritionist due to his low weight (20lbs) and the fact that his caloric intake will be decreased even more by the new thickener consistency. She was able to (finally) show me the growth chart they use, based on his height and not comparing him to the regular growth chart. According to his height he is still only at 7% for weight and they like them to be at at least 10% for health reasons. So, together we have built a nutritional plan of action that includes 6 meals a day, his usual 20oz of milk mixed with carnation, and some ideas to add more protein rich foods as well as fat to his diet (ie. eggs, olive oil, butter, avocado, etc). I feel like we are constantly feeding the little stinker!
An yet another note, his Physical therapist suggested we look into getting a stander to start helping him stand for longer periods of time. So, here we go with the search to find a stander that is used or borrowed or cheap since our insurance seems to find a way to get out of covering anything he needs. I am excited to actually get one for him, just not looking forward to the process of getting it (or the financial implications of getting one).
Yes, we are STILL working on Jacob's Ladder Foundation and we finally have started to make some progress thanks to my dad and a wonderful volunteer named Jennifer who are both working hard to make it all come together. We are hoping to have most of the basics done by the end of June with a kickoff event sometime this fall!
On a final note, the end of May and Jacob's second birthday is quickly approaching. I can't believe it has been almost 2 years already, but on the other hand I can't believe it's only been 2 years! So much has happened and I feel very thankful for all the good that has come from Jacob's birth. He holds a very special place in my heart and I know he was brought here to touch many lives including ours!
Glad to read the update! Sounds like you have a good action plan for weight gain. I'm using basically all the same strategies with Sophie. I, also, use a product called Benecalorie - 330 calories for 1.5 oz. I add it to her milk. It's rich but adds a lot of calories in a small volume since Sophie's volume intake is so low. Anyway...hope you find a stander soon!
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