As this is my outlet to vent, I felt like describing the feelings I have been having besides the frustration. The feeling of saddness that my son will always be fighting for his health and the feeling of jealousy when I see friends and family members have healthy babies. I felt that I may offend some of you and therefore am holding back. Don't get me wrong, I'm ecstatic for my friends and family with their new bundles of joy! It's so wonderful to see their family grow.
I know that I shouldn't have these feelings but it is very hard at times! Alexander is thriving and in areas that I'm not Expecting- which is FANTASTIC and I'm BEYOND grateful! I know the situations could be worse.
Okay, So my semi-rant is over. As I mentioned, Alexander is doing GREAT. The last time he was weighed, he was at 17 pounds 10 ounces. We no longer weigh him, so you could say we are starting to become "normal" parents. :) We predict that Alexander is now in the 18 pound range.
In the past 2 months, Alexander has excelled more than he ever has. He's crawling for starters! Started crawling the second week of March and is now learning to pull himself up onto his knees. When placed on his feet he will stand up and he FINALLY learned to sit up from a lying down position! Needless to say, nap time has become a little more difficult! His physical therapist has now begun to teach him to pull himself up to a standing position. Cognitively-he's right on track! If not, higher! :) He amazes me everyday with how much my 14 month old understands. He's completing 3 piece peg puzzles, putting basic shapes into a shape sorter, identifying many objects, and imitating just about everything.
Feeding has gotten better too! We've finally begun to feed him soft foods and not just purée. Alexander is also learning to drink from a cup. Speech isn't there, as mentioned, nor is he imitating anything with his mouth (sticking out his tongue, blowing raspberries). A few weeks ago he received an oral motor evaluation and it has been recommended to Regional Center that he receive speech therapy. Problem is, they don't provide it to kids until they are between 15-18 months because an occupational therapist works on the oral motor muscles to help get babbling started. So, I'm working on pushing for speech anyways because he's almost 15 months. Until then, we have begun teaching Alexander sign language because he's becoming frustrated when trying to communicate to us. He signs "all done", " more", "cracker", "milk", "eat", and "book". Last months cardiology appointment went well. However, they did find that his ASD (hole in his heart acting as a valve) is forming scar tissue. If the scar tissue continues to form, Alexander will have to go back to the cath lab. This coming Thursday, we go back for his check-up and find out how his heart is doing. My stomach will be in knots until then. Prayers needed that all looks good on Thursday!!!
He had an orthopedic appointment last month as well (yes, busy month). The doctor said nothing could be done with his foot now and to wait until he's walking, in order to get a better idea of what is going on. So we go back in 6 months. His vision appointment was earlier this month too. We learned that he still far sighted and the possibility of him needing glasses is still there. We go back when he's 2 years old to get a better idea.
Overall Alexander is doing great!! Wes and I are just watching him grow and are busy all of the time teaching him new skills and exposing him to the world around him.
We hope you all had a wonderful Easter! ❤️
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| 2013 Easter |
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| 2014 Easter |
I can soo relate! Last month the neurologist told us Sóley was behind in her physical development by two months. Everyday I battle my anxieties over so many things, the main focus has been her feeding and weight gain because nutrition is so important for brain growth, but she is a REALLY bad eater! We have her on medicine to increase her appetite, but all it really does is make her more compliant about eating, but it can still take up to an hour to feed her, she barely ever opens her mouth so a lot of trickery is used to get her to open up, which is exhausting! She chokes still on anything too lumpy and is only just managing thick foods. We see a physical therapist so we have to practice at home too, this sometimes causes oh so fun screaming fits! But we know we have to push her and she is finally starting to learn so many new things : )It's always been hard though to fully enjoy the things she accomplishes because it's straight to practicing the next milestone we need acomplished. I'm so jealous of Moms with babies who love to eat and eat fast and who never feel anxious about the milestones, for us it's always will she do it, is she not doing it because of the brain damage or would she always have been late???? And I still cry about the birth and that day. I hate watching TV and movies that show perfect births. We are really hoping that when she sees the neuro again next month he will be happier with her and wont feel the need for more brain scans. I know what we have and are going through with Sóley is not the same as with Alexander, but I just want you to know that you are not alone in your frustration at not having a perfectly healthy baby xxx
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