Answered Prayer

                                            

As most of you know Arwen has struggled with weight gain and drinking enough fluids since birth. Though when she was breastfed the first year the doctors never found any swallow issues while nursing that would be causing her weight issues. Then for the past year of her life we have been told numerous times nothing was wrong with her and that she was just stubborn and choosing to not drink enough on her own. We tried the NG tube twice last year with no success. The first time she was getting so full on fluids that she quit eating almost altogether so we took her off it. The 2nd time she pulled it numerous times a day and we had just started cathing so we physically/emotionally couldn't do both cathing and ng. So we thought that cathing was more necessary. Well now it has been a year almost since she has been done nursing and we still couldn't figure out why she wasn't drinking enough fluids. She continues to get uti after uti...so since her bladder and bowel regiment are going well we knew it had to be due to her not drinking. So after talking to doctors and nurses for the past week we finally came to a middle ground agreement that she did need the NG tube to help hydrate her. But I was still wanting her to be tested for medical issues causing her to not drink. They kept pushing me away saying she didn't have anything keeping her from drinking but they will do another OT evaluation to ease my concerns basically. Ha well just like normal we were told we had to wait a month and a half for an apt. I was pretty upset since she has now gotten 2 more uti's just this month and really didn't want to wait that long. After an emotional day at the er yesterday and lots of wonderful people praying for her we received an answer to prayer...an apt this morning for a feeding evaluation!! We barely had 10 mins to get out the door but we made it lol!
I really asked God to guide this therapist and that she would be able to find an issues if there would be any. And I tell you she found them within the first 5 minutes!!! I am so sad that Arwen does in fact have some obstacles delaying her but I am so happy we FINALLY got some answers. It wasn't me just being paranoid haha! It was a selfish but nice validation to have her clinic doctor and nutritionist in there with her OT because they were the ones telling me she had nothing wrong. An hour apt then turned into 2 1/2 hours because she had more going on then they were aware of. They watched her eat, drink, talk, ect.
I am not good with medical terminology lol, but basically she has a reverse swallow. So instead of liquid going backwards down her throat when she sucks in the liquid pushes forward towards the tip of her tongue and mouth where she keeps it for a long period of time then swallows. Causing her not to be able to drink consecutively at one time. Her tongue does not separate from her lower jaw. It's not tongue tied that she can see, but it is affecting her jaw movement and speech. I am sure the OT explained in detail more but the doctor didn't write it in her notes for some reason. The OT did try some electrode therapy with some thickened juice and Arwen seemed to respond somewhat better to those. So Arwen will be going to get intense mouth therapy from OT once a month for now, try thickened gel in drinks, she can only use straws, will have ng tube placed on monday to hydrate her, and will be getting speech evaluation in coming weeks.
After a month or 2 with this plan the doctors will then reevaluate her progress and if she seems to be drinking more with thickener gel and doing well in OT then we will decrease the ng feeds. If she is not doing any better with drinking on her own and OT then we will be looking into getting a Gtube placed for hydration.
So please be praying Arwen will succeed in drinking more on her own, she will handle the NG tube better this time, and that she will make great progress during OT.
Thank you all so much for your love, prayers, and concern for Arwen. She is such a joy and is so strong. The Lord continues to show Himself to us through her little life.