Monday, July 29, 2013

Problemettes and Progress

The past month and a half have been as busy as ever! Kinsley has had some minor medical issues pop up which I will tell you about (hence the "problemettes" in the title), but she has also shown us some fun steps of progress which I am excited to share with you.

Problemette #1: Kinsley has a peanut allergy. :( Around the middle of June I made Kinsley a peanut butter sandwich for dinner one evening. She'd tried peanut butter once before, but didn't really like it, so I didn't give her anymore for a few months. But people say you should keep trying foods as it takes up to 10 times for a child to decide whether or not they really like a food. So we tried the food again and she seemed to like it this time since she ate the whole sandwich. Yea! An easy food to give her to get some protein and for on the go times. But, alas it was not to be. Within two hours of eating it Kinsley began to cough weakly and she got red around her mouth. Then the redness spread and continued to spread until she was covered in hives all over her body. Poor baby. She did not enjoy that. I gave her a dose of Benadryl and that quickly seemed to help the problem. The coughing stopped soon after that. We took her to the ER to be on the safe side. They said it was good to bring her in, but that thankfully she was doing fine. They prescribed a steroid treatment for a few days to be sure there were no re-occurrences from the food still being in her system. Thankfully she seemed totally fine the next day with no more hives and nothing else popping up. We followed up with our pediatrician and we've set up an appointment with an allergist to do a nut panel and be sure she's not allergic to any other nuts. So, like I said, this is a problem, but honestly, of all the things we are dealing with, this is a minor one.

Problemette #2: Kinsley has to have her liquids thickened, at least for the time being. One thing Kinsley has always been good at is eating and drinking. She's never been a picky eater and likes most everything she tries. However, sometime in May she began screaming during meals and it continued for many days. Not knowing what was wrong we set up several appointments to try and figure it out. One appointment was to have a swallow study done just to see if there was something going wrong while she was swallowing. Another appointment was with our pediatrician just to be sure she didn't have strep throat or something else causing pain while swallowing. As it turned out neither of those things was it. She had an ear infection and it was just causing her to be irritable especially while chewing and swallowing (as it moved her ear). However, we decided to keep the swallow study appointment just to be on the safe side. We were not expecting to see anything on the study, but that was not to be. For those who don't know, a swallow study involves the patient swallowing different foods and liquids of different thicknesses and watching the swallows on an x-ray like machine. Kinsley did great swallowing all the foods and liquids up until we got to the straight liquids. Unfortunately at that point she silently aspirated twice. This means the liquid went down the "wrong pipe" as we usually like to describe it, but without her coughing or choking or anything. Obviously, this can be a problem as it can lead to pneumonia eventually if left untreated.

The thinking is that she has some low-tone in her mouth which was causing her to not control a large amount of liquid in her mouth at one time without aspirating. So, for now we are adding a thickener (at nectar thickness for those who are wondering) to all her liquids. She'd swallowed that thickness during the study with no issues. We also added a second speech therapy session each week after the study was done. We're continuing all our speech goals as before, but we are also now working on some oral motor development by doing oral motor exercises. The hope is that these will build up her mouth strength and that within a few months she may not need anymore thickeners. We shall see. Once again, this is a problem (and believe me I am TIRED of problems popping up), but once again, it's not too big a deal. She continues her normal diet and all that we have to do differently is squeeze some packets into her drinks which I am more than willing to do to keep her healthy. :)

Kinsley's had several other appointments since my last post too including three visits to her pediatrician (one sick, one well and one mama thought maybe she was sick, but thankfully not),  developmental pediatrician, audiologist (who gave us a good hearing report), neurologist (with another pretty good EEG like the last one), opthamologist and of course all of her therapy sessions (now at 8 sessions a week!). We've received good/normal reports from each of these for which I am very thankful. Of course it has kept us all very busy!

Progress wise Kinsley has added a couple of exciting skills to her repertoire of late. First of all, about a month ago she started babbling "mamamama"! I love to hear her say it, though of course she does not say it with meaning yet, but it gives me high hopes that some day she will. But, even better is that in the last week she has even begun to imitate it! She doesn't copy me every time, but she has done more times than I can remember now, so she definitely seems to have that imitation down! This makes me one happy mama!

Secondly, Kinsley has FINALLY learned how to push herself from her tummy into sitting all on her own! We've worked on this for a long time, so it's nice to see her finally make it there! Her arms have been so weak for so long that I wondered if she would ever be able to do this, but she's done it twice in the last week, so we are so excited for this step of progress! This shows a great amount of strength has been gained in her arms since she began therapy for which we are very thankful. Hopefully this will lead to more exciting things (maybe crawling next?! Fingers crossed!).

I must admit that it is sometimes difficult for me to be patient and not worry about Kinsley's abilities. I sometimes fear she will never "make it" to things like walking or communicating. This is a hard road to walk. But I am only admitting this in hopes that I can ask for your continued prayers and encouragement. I know Kinsley can do these things because I know God is in control. I just have to be aware that it may take a LOOOOONG time for some of these things to come, but that does not mean I must give up. Take, for example, the fact that she learned to sit unassisted at nine months, but it took until she was 19 months to actually get herself into sitting. Ten months is a long time, at least for normal development. But that's what I must remember. She's not going through a "normal" development. This is at her own pace and I can not control that. All I can do is persevere and keep pushing her. This means fighting the fears, doubts, saddness, physical, mental and emotional fatigue and any other temptation to wallow in self-pity sent by Satan. I will fight to help my sweet daughter do all and be all that she can be. Praise the Lord that he is here to help because I know I could not do this without Him.
"Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” Deuteronomy 31:6
I would like to also tell you about a blessing I have received. I have officially been offered a posiion as an adjunct university supervisor to student teachers by Harding University (for those who may be confused, Harding has a satellite campus in Northwest Arkansas for whom I will be working). I will be supervising four student teachers this fall meaning I will observe each one four times and will be guiding them towards becoming fully prepared to teach after this semester. I by no means think I am the best teacher ever, but I have hope that I can guide these soon to be professionals towards a successful start to their careers. I am nervous, but very excited about this blessed opportunity. I am most excited that this work will only require me to be gone one day a week from Kinsley so I can continue to keep her and her therapy and other appointments as my focus. Luke will be able to care for Kinsley on the one day I work as he always has one day off during the school week. Thank you, Lord for these blessings!

I will leave you with some pictures from our summer vacation which included a trip to Memphis to spend time with college friends and their kiddos, my parents house in Alabama and a week at the beach in Florida! Fun times! :)

At the Memphis Zoo

Levi and Kinsley at the Splash Pad in Memphis

Beach baby!

Grandaddy David and the beach baby :)

Family picture on the 4th of July

A very windy evening at Rosemary Beach!

4 comments:

  1. Caroline,
    Rodney and I love you and Luke and Kinsley so much!!! We are always praying for you and Luke as well as sweet Kinsley! Can't wait to see what else He has in mind for your sweet girl!

    Love The Bailey's

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  2. Thank you, Lauren! It means so very much and we so appreciate it!

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  3. I love that she can now push herself up and love those Fourth of July photos. x

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