I can not believe it has been 4 years since my last post. A friend just updated her tubie’s blog and I replied that I guess as tubie life became routine and I became more secure in my parenting instincts, I didn’t need the blog like I did then. I truly needed this place to tell our story. I needed this place to speak my mind when I had to stay quiet as everyone told me I was doing it all wrong. I needed this place to just let it all out. As I read over my posts, I can see how much I needed it and how many emotions were backing the words on the screen.
On to today. Haven is 7 1/2 now. She is THRIVING. Do you hear that?? THRIVING! It’s hard to count the blessings! She teeters between 46-48lbs. She is 46″ tall. She is in 2nd grade and while there are struggles, she is extremely smart.
Let’s see. When she was 4, Haven was diagnosed with Autsism Spectrum Disorder, Sensory Processing Disorder, oral feeding disorder, and anxiety disorder. It was a stressful time, but having the medical backing has helped in getting her the services she needed.
So the big question…is she still tube fed? Is she eating? Yes and yes. She still receives the bulk of her nutrition via her feeding tube, but life really changed a little more than a year ago. We had taken three years off of feeding therapy, for mental reasons and because insurance would not cover it. at the beginning of 1st grade she started back to feeding therapy, as were able to get a grant now, having a diagnosis. I believe it was a combination of being older and it just being the right timing, but Haven began to eat! It was beyond shocking to me, as I had to come to accept that she may never eat and that she would be perfectly fine if that were the case.
Let me back up one sec. Very shortly after my last post, we switched Haven to a blended diet from the formula diet. We had no support from her GI or nutritionist, but I knew what my girl needed, and pedialite was not working. Immediately she went from throwing up multiple times a week to never throwing up at all!!!! Literally, she threw up twice in the first year we switched to blended food, once because she was too hot and fed too fast, and once because she was sick. It was like night and day!!!!!
I was able to trial foods and find what helped her little tummy and what hurt it. She was also able to go off all Miralax for her constant constipation because we removed dairy from her food. She went from two adult doses per day, to nothing and we have never had another problem with constipation! She had gotten to the point where even the 2 caps a day weren’t always enough, we had to do clean outs every 2-3 months on top of that.
So, no more throwing up, no more constipation, and this is when she began to thrive! While on the pedialite, she gained but she was always behind her friends. She was two or more sizes behind them in clothing and shoes and always shorter. After we switched to the blended food through her tube, she grew like crazy! She just looked like a whole new kid! She is now one of the tallest of her friends, in the same size clothes and shoes, she is just one of the typical kids.
Back to feeding therapy. I got off on that tangent because I don’t think she would have been ready for real food had we not made the switch to blended food because she would have still been in too much pain from the effects of the formula.
The type of feeding therapy was also different…tho unbeknownst to be at the start. In all the years we had been told to NEVER force feed her orally. Well, on the first visit, that is exactly what the therapist did. When I saw my child splotchy from tears and beside herself, I wanted to run and never go back. After I cried for two days, I stopped to notice that Haven was not traumatized, like I was. Ha! I asked her about the experience and while it was definitely not fun for her, she saidthe woman was nice, and she did want to go back. Mind blown. Tentatively, we returned, and step by step, Haven began to eat. Haven began to eat. Words I never thought would come together.
I will just skip to now. Haven loves a huge variety of foods! Her issue is quantity and speed. Oh how painfully slow she eats!! It is still a constant prodding of, take another bite, are you chewing, chew, you’ve had that bite in your mouth for five minutes. And she eats about the amount your typical 2 year old might. Her feeding therapist wants us to push and to cut back drastically on feeds, but I am fine going at Haven’s pace. We have reduced one feed per day and I typically reduce two more feeds by one syringe. While her feeding therapist doesn’t agree (Hi Irene), the removal of food has never been a motivator for Haven. And I will note that “force feeding” is probably not the name of the technique Irene used…but as momma, that is what it was to me. On day one I believe Haven ingested half a Popsicle (which cold/frozen foods were hell to her) plus two other foods. That was more in 45 minutes than she had ever had orally in her 6 years of life. The method seemed like madness to me, but the place we are now is a good place and Irene, you have been a huge help to us!
Haven receives a tube feeding before school, twice at school daily, she eats lunch orally in the lunchroom with her peers (again, the slowness factor is what holds her back here), she then eats dinner orally at home and has a tube feeding before bed. I had hoped to reduce her school feeds now, but we are currently struggling with anxiety and issues at school that prevent that from happening right now. My hope is for a great reduction over the summer. We’ve talked about it and she agrees that would be for the best going into the third grade so she won’t miss so much class time.
Overall, Haven is a happy, healthy, wild and crazy, very unique and self secure little bit of heaven! She lights up my life and has taught me more than I ever could have imagined. I believe she will be tube free one day. I believe she will get there in her own time. I believe she will add beauty to this world that can only come from her. God created her for this moment in time. I am just grateful He saw fit to allow me the honor of being her mom.