One Mad Cat

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Back in the day….when I had a quick-growing boy, the frustrations and expense of constantly shrinking clothes and shoes was kind of a pain. Perspective is a wonderful thing, and when River starts showing signs of growing out of things I get enormously giddy with excitement! I’m here to announce that River is now a 4T……4T people!!!! I literally can’t wait to go out and shop for some new things! Of course, she has a closet full of things that still fit, especially items that were bought a little too big. I get really gaga over this because it indicates her weight gain and growth!

We recently had our check up with Dr. P, and he was pleased to see her little dot move back up to a more acceptable growth curve. Her current gains have only taken her back up to an 8th percentile, but at this point we consider that her average. Dr. P continues to feel that this is where she wants to sit naturally, and that she looks overall healthy and bright, so he is not pushing us to do anything new. We will continue along her current feeding plan, which consists of 10-15oz of tubed food a day. We had her tube switched out at this appointment, which is the most difficult portion of the visit. She really throws a fit now, and gets very panicked about it hurting. Dr. P was able to finally get a new tube in, but unfortunately we haven’t figured out a non-traumatic way to get River through this. If the newer AMT-minis get easier to change(as their new design is supposed to do) I may try to go back to changing them out in her sleep as I did before, because it was 100% non traumatizing for her! But that was with the Mic-key button, which has a really smooth design, and easy to switch out. The AMT has a ridge that makes it stay in nice and tight(less chance of being accidentally pulled out) but a lot harder to put in. Dr. P said River’s g-tube tract is very healthy and tight, which is good for some reasons, but makes changing extra difficult.

River’s perception of her own g-tube has started to evolve. She is really fascinated with the new glow-in-the-dark version she received. She has some understanding now that we give her food through her “tubie” because it’s helping her to grow, and because she doesn’t eat enough herself. Sometimes we give her a choice, like if it’s just whole milk, water, or formula, going in, to try and drink it instead of having us tube it. Every once in a while she opts to drink it! So we are slowly moving into a zone of comprehension. But when we talk about the future when she might get the tubie removed she seems frightened by this prospect. Her tubie is a part of her, and it’s all she’s known. It’s extremely understandable that she feels this way. We gingerly approach the subject with only positive conversations.

I am still not ready to give her a trial wean again. We are patiently waiting to see how she does day-to-day, and look for signs that she’s ready. With her new found “chubbiness” we can see a time when a trial weaning might be nearing.

I know that many parents find my blog hoping for guidance, or ideas, or hope for their own tube-fed or heart kiddos. I don’t have a lot of advice, I only know what I’ve experienced. But I know that I was convinced that River was going to get her tube out long before we reached the age of 4. I was sure we wouldn’t be one of the ones who had toddlers, or older children, with a g-tube. Not us. No sir-ee. River was going to be one of those who figured it out at the age of 2 and would be among those early tubie-graduates.

I’ve learned that you only take one day at a time. Don’t give yourself unrealistic goals, or put this kind of pressure on yourself or your kid or your family. We went crazy going to therapy after therapy, to the intensive 2-week clinic, and beyond. Yes, we have achieved a lot, River was a baby who couldn’t put anything into her mouth or swallow. Now she eats! We have come so far! Just enjoy the little triumphs, have fun with your baby, love them, they will get there when they are ready. If we keep going forward, one day at a time, one day we will look up and before we know it things will change. Be at peace that your child is doing exactly what they need to be doing. Yes – therapies and clinics and research and effort is key to progression, but don’t drive yourself to misery because your tubie kid isn’t off their tube yet. There are so many more important things, like that they are well fed and growing enough with the help of the tube that their brains can develop, that they can be bigger and stronger to play, that they are happy and surrounded with support and love. One last thing I’ve learned: use real food whenever possible, get a Vitamix, don’t let your baby develop on formula that’s filled to brim with HFCS, sugars, over-processed crap. USE REAL FOOD.

MUSEUM OF GLASS

River recently won a spectacular prize!! Back in March, both the kids made a little drawing while visiting our local Museum of Glass, and entered their Kids Design contest.

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This was her entry, and she was chosen to have her drawing turned into glass art for May 2014. We were invited to attend the session and watch them make it live. River wasn’t exactly thrilled with the whole thing. Ewan really understood what a cool thing this was, and was very excited for his sister. She is very shy, and the whole experience was a bit overwhelming for her. She also confessed to me she didn’t like her drawing anymore. Oh poor baby! She will understand when she’s older, that even though she may not like her drawing anymore, that we all like it, that the artists at the glass museum saw something great in it, and it will be a piece that we will all treasure forever!! As an artist, I get that you don’t often like your own art, it’s totally normal. She’s also 4. 🙂

Here is more pictures of our amazing day at the hot shop! The museum makes two pieces, one for the museum to keep, and one for us.  We will get it in a few weeks!

 

Early stages
Early stages
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This is us clapping at the end!

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Finished piece, still very hot
Finished piece, still very hot

 

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2 thoughts on “One Mad Cat

  1. I found your blog by searching apraxia and CHD. My son (2nd child) was born with cctga, VSD, ASD and tricuspid regurgitation he is 19 mn and has had two OHS with more to come. My oldest a girl (4 yr) has had speech problems for a while, but just recently been diagnosed with apraxia and a couple of other things ( I can’t remember my brain is to full). I just thought I would say it is comforting to see another family similar to ours in the medical sense. I blog kinda at charityfortheheart.com

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