Noah and I spent the afternoon at Children's Hospital visiting the Infant Services Team. Today's crew consisted of his Speech Pathologist, Social Worker and Dietitian.
It was a great feed therapy session (even without the Occupational Therapist). Noah crunched on a bunch of different foods, and we think he did a few swallows! Way to go, Noah. He loves the fact that 4 adults are cheering him on with each bite. He also squished a banana but did not want to eat it today. He only does this well at home a few times a week so I'm really glad he is a willing participant at the hospital clinic.
The downer (and only a little because I've learned that Noah tends to rise above the labels he is given except when it comes to feeding) was the speech assessment. Noah is showing a minor speech delay so we may need to shift our focus in session from only food therapy to also include speech therapy training. They will also bring the physio therapist in next session as they believe Noah has some potential delay. He bum scoots but doesn't pull himself up to stand or move around when he is put in a standing position. Again, I'm not going to put too much emphasis on these concerns as there was a time that neurology believed Noah had significant low tone and won't sit on his own. He's certainly proved them wrong! Speaking of, I have to see the neurologist at the end of this month. I think they'll discharge him as a patient but I'll keep you posted.
In terms of diet, that's where I feel overwhelmed. Noah's first 2 feeds of the day were just brutal. He cried, retched and punched the syringe throughout, causing mommy to spill lots. He had a tough night and was extremely tired this morning so perhaps it was the lack of sleep. He also has had some stooling issues which I haven't been able to sort out. The lack of bowel movements is troubling. The problem is he isn't constipated and I wonder if it is related to GI issues. I'm always sweating over his bowels so I'll just keep trying to work on it from the inside with prune nectar and water, which usually works.
Noah is on day 4 of oral (in our case it goes down the tube) Fluonazole to treat a lingering yeast infection. I held off for almost 6 weeks trying to treat with topical creams etc. but I gave in on the weekend and filled the script. Selfish moment: these are the times I wish we had insurance of some kind. Besides the monthly Omeprazole (PPI), he has had a need for some kind of med. almost monthly. We will of course be fine.....it just hit me today because the Social Worker was shocked that FSCD (Family Support for Children with Disabilities) doesn't cover any of the Neocate. I just shook my head and said "you can't win every battle." That being said, please pray that our 6-month contract for limited services be extended. I meet with the social worker next week for an in-home evaluation.
Anyways, the dietitian wants us to stay the course and concentrate Noah's Neocate to 1.0cal and begin mixing in a can of Pediasure daily. Every 2-3 days we'll add less Neocate and more cans of Pediasure. It will likely take about a month to get to the 4 cans of Pediasure daily. I'm still feeling mixed emotions about a milk diet. On the plus side, she was positive about my desire to investigate and research a homemade blenderized diet. While we are not ready to dive head-first into that right now, I've been reading many articles and blogs on the subject. I anticipated push-back from her so I was really encouraged by her willingness to discuss it. Well see what our Dr. says when we chat next.
Noah been a grump (I hear him crying at daddy who is putting him to bed). Noah is so strong. When I go to vent him lying down, he'll wrap his legs around his PEG g-tube and twist until I can't get air out. He fights putting pants like it is torture. Plus he thinks it is hilarious when I get stern with him. He's really funny about certain things. Oh well, we'll cope!
I still need to call the Pediatrician about Noah's coughing. We have appointments everyday this week for either him or I so perhaps it will have to wait a week or so.
So, it is the eve of my 33rd birthday. My life is filled with love, joy and challenge. This year, all I want for my birthday is a full night of sleep - hahahahaha. I like myself a lot more than a year ago. I'm amazed that God heard my pray for help and sent people who understood depression and the prison it feels like. I'm thankful for family and friends who stood by the shell of a woman I was, knowing that Dar would emerge again. I'm grateful now for a sense of understanding when others deal with post-partum. It is totally a separate journey from Noah's. Too often I've had to remind myself and others of that. It wasn't because Noah had health problems that the depression was present. I'm so thankful that God has granted me the return to good mental health (on most days)!
Happy Birthday!!
ReplyDeleteHappy to hear that Noah is doing well. I think your right in not putting too much emphasis on Noah's potential delay. Every child develops differently and Noah has already proved Neurology wrong by being able to sit by himself - yeah Noah!
As for the speech delay, Allie had a significant speech delay and she has been in speech therapy for over a year now. Since Allie didn't get all the nutrients she needed her first year of life, her brain basically stopped growing. Her speech and balance were affected. Now that she is tube fed, her speech is slowsly coming back and her balance is normal. Don't get me wrong, her speech has taken a lot of effort on all of our parts, but she is doing well now. Actually she never stops talking - problem is she cannot articulate her words well so we don't always understand what she is saying. Speech therapy has done wonders for our Allie and she has made great progress. I'm happy to hear that Noah's delay is minor. It's best to get him the therapy sooner rather than later (at least from our experience). Our speech therapy did wonders for Allie - she went from saying nothing (not even babbling) at 28 months old to talking non stop at 2 1/2. Good luck!
Hang in there with his feeds, I know it's hard when they hate it so much. I have no advice for you on that aspect because I myself struggle everday with Allie - uggg....it sucks!
Good luck with the milk trial. Is the doctor thinking Noah might be allergic to milk or that he just won't be able to handle the non broken down formula? I'll be praying that he handles it great!
Take care and thanks for keeping us updated.
Hi Jodi!
ReplyDeleteThanks for your comment - we are happy for the help of professionals but know to let time pass and see what Noah does. Of course, in the case of feeding it has only gone downhill over time. But I knew that as soon as the NG went in. Everyone thought I was so negative or depressed or both at the time, give it a few months was the comment. But I just had a momma instinct that the journey with tube feeding would be a long one.
I think of you often with feedings. It is someone only us tubie moms can understand!
For the milk, there has never really been more than an idea about intolerance or allergy - never has there been testing or ENT visit. We'll just see. So far, the first day is going well but usually we spend a lot of time transitioning before we know how it will go!
Thanks for taking the time to comment. I love your bead behaviour plan!