Lately

I figured it was time to update everyone on Kinsley's progress of late. There are several issues which I would like to tell everyone about and request your prayers for.

First, and at the foremost of my mind is Kinsley's ERG tomorrow. Please be in prayer about this if you can be. It is going to occur at noon tomorrow and she will be sedated for this procedure. This is scary for a few reasons, first sedation is always scary, but can be worse for people with muscle diseases. Thankfully, we know from two previous experiences that she has been through sedation just fine with no issues, but it's still a slight concern. Additionally, she has to fast before it and therefore may only have one cup of apple juice tomorrow morning. No food and no other drink. This is something no toddler would tolerate well, but certainly not one with special needs who doesn't understand why she can't eat anything. So, that should be fun. Now, what's an ERG, you ask? It stands for electro-retino-gram and it will be an in depth eye exam for Kinsley. In my last post I mentioned how the ophthalmologist at the NIH suggested we have this done to check for retinal degeneration of Kinsley's retinas. We were supposed to have it done in August, but Kinsley and I both got the stomach bug the weekend before it was scheduled, so it was rescheduled for tomorrow. Please pray we will get good results which show that her retinas are great without any degeneration and also for the issues mentioned above.

The next issue we've been dealing with are Kinsley's seizures. Most of you know we've never fully stopped Kinsley's seizures, but they were not happening often and each EEG showed that her brain waves looked pretty good, with only occasional minor spikes that were not hurting her development. Although we'd prefer that not to happen, it was the best it could be if seizures were going to occur. Unfortunately for the past several months we've seen an increase in the number of and intensity of her seizures. They were happening about once a day. We tried several increases in the medications she was already taking, which would help for a little while, but eventually not so much. So a little over a week ago we added a third seizure medication. The great news is that it seems to be helping so far. Since starting it she's only had two seizures and none since last Tuesday. We're very thankful for that and ask that you pray this will continue to work.

The down side to any seizure medication is the side effects. The main ones we're dealing with this time include behavioral changes, effected sleep and balance issues. With this med, many people are calmer, but it can have the opposite effect. At first it seemed that Kinsley was calmer and happier over all, but as we slowly increased the med to the appropriate dosage, she's been cranky seemingly without cause. We're thinking the medicine is probably the cause. Also, her sleep is somewhat effected. Some nights she's waking in the middle of the night and others she sleeps through, but wakes up an hour or hour and a half earlier than normal for her. The worst side effect is it effects her balance. For a child who already has balance problems, this isn't something we want to see. Her tone is worse which just makes her more wobbly all around while she's trying stand or walk. It's not setting her back too far, but is definitely making her progress in those areas harder to achieve. All of this being said, the side effects should subside as her body adjusts to the medicine. Please pray that happens, but that the medicine will continue to hold back her seizures.

So, how is the walking coming? Since we've started using her walker, Kinsley's walking has improved so much. She's able to use the walker with minor help in direction changes to walk at least 50 feet. We use it often to walk from the car to different buildings we're entering. It's still easier to carry her around and she's not totally the best at avoiding people and all objects yet, so once we can find a place to "park" her walker inside we're mostly helping her walk by holding her hands, letting her crawl still or just carrying her. The biggest change since last time I posted is that she has started taking independent steps without her walker or holding anything! Around August she started walking in the shallow end of our neighborhood pool a few steps at a time. Slowly that transferred to on the ground and now she can consistently take 6-10 steps at a time. She still loses her balance often so one time she may take two steps and fall and the next she could take 8 steps. And then go right back to two. It's still a work in progress and like I mentioned above, the new medicine is not helping us with it at all. However, it is her PT's goal and mine as well that she be able to walk across a room all by herself by her 3rd birthday (Dec 20). Will you join me in praying this specific prayer to meet this goal? I know it will be more than possible, with God's help, for us to reach this goal. Here's a video of the progress so far:

Speaking of turning 3, Kinsley will soon be losing her wonderful developmental therapist. Carol has been so wonderful for us the past two years and she will remain a great friend, I'm sure, but sadly Kinsley will not be able to see her anymore when she turns 3. Kinsley's developmental therapy is funded through the Early Intervention program which only goes to age 3. After that she enters the world of public education if we wish to continue developmental therapy. So, we have some tough, important decisions coming up. In just over a week we have Kinsley's first IEP meeting. It's a scary thought, but I know it will be so important. As a teacher I sat through many of these meetings with ease, but as a parent I'm somewhat terrified. I, obviously, want what is best for Kinsley educationally. This doesn't mean she even needs to do anything right now, but there is an option for a half day, four days a week pre-school which we are considering. We think some socialization with other kids would be good for Kinsley, but we still aren't sure if she should do this or not. Thankfully, if she does this, she'll still be able to have the private PT, OT and ST she already has and we will not be changing that at all. Anyway, please pray we'll make the right decision.

Ok, I've asked for MANY prayers this post. I apologize, but truly I'm praying about each of these things constantly and I'd love your help as well. It's greatly appreciated. I would love to be praying for you as well. I've recently started writing all of my prayer requests down along with the many friends and family I know with their own requests (I should have been doing this long ago, I know). There is so much hurt and hardship in this world, but I'm so thankful God carries us through it all. One of those ways is when we help each other. So please send me your prayer requests as well. I'll add them to my list and will lift you up in prayer as well. "Bear one another's burdens and so fulfill the law of Christ." Galatians 6:2

Now for some pictures of our sweet girl over the last few months:

Playdate with Aubree

Getting ready to swim with Ellie (this girl loves the pool!)

Splash pad with Cooper

First haircut!

During a recent 8 hour EEG

Still patching 6 hours a day 6 days a week

Standing girl

2nd Trip to the NIH

Well, we've made our second trip to the National Institute of Health for Kinsley to continue as one of their patients in the natural history study they are conducting on congenital muscular dystrophy. The trip was a few weeks ago and proved to be a good visit with a little bit of new information for us.

First off, I should explain that as a part of this study, Kinsley participates by being examined by the neuromuscular team, physical therapy and ophthalmology. They record her progress with the disease and will continue to do so as long as we want to continue to be a part of the study. The purpose of the study is to gather as much information about her disease and others like it in order to gain possible support/funding to (hopefully) bring about possible clinical trials which could lead to treatments and even a cure to these diseases. We are also extremely thankful to get to participate so the experts like Dr. Bonnemann, who we get to see, can give us as much insight into this rare disease as possible. Also, each appointment is free since it's a part of a research study, so we are very thankful to be a part of it and pray it will be beneficial and truly helpful some day. We only have to pay for the travel and with the generosity of everyone who helped with Kupcakes for Kinsley last year (and from others) we have plenty of money for a few more trips! Thank you again to all who helped with that!

Here's the low down on what we learned this trip. First, Kinsley is progressing VERY well. Compared to what could be happening and what, very sadly, is so often the case with MEB, Kinsley is making so much progress and very quickly. They were very impressed with her gross motor skills and how much she had gained in the last year. Dr. Bonnemann said he has no doubt that she will walk without assistance at some point. Her biggest problem getting there right now is due to balance issues. She is very unbalanced when trying to stand or walk independently. She can stand alone for anywhere from 3-60 seconds at a time, but the longer she does it the more she has to concentrate to remain steady and that wears her down until she falls. He said this is due to her small cerebellum (one of her brain abnormalities), but that with time she will be able to overcome it. Yea! We'll just keep practicing. In the mean time, Kinsley's physical therapist has provided us a walker which she is learning to use like a champ to help her walk without the assistance of a person. We're very excited about this! Here's a video of the first time she tried it out:

Ok, back to the NIH news. Other than their pleasure with her progress, we didn't learn much new info from Dr. Bonnemann. We were told to increase her vitamin D intake to help avoid possible osteoporosis which could happen in the future. We also asked about any updates on the possible gene therapy they told us about last year. They were still very hopeful about this, but funding is an issue, so PLEASE be praying more funding will be brought in so they can make progress in this. In order for it to be able to benefit Kinsley, a clinical trial would have to take place while she is still healthy. If she starts to have medical issues stemming from her disease then the gene therapy would not help those issues. So please pray for this. Also, if you find it on your heart to give money towards this please let me know and I can give you information on where best to send your money.*

When we visited with Dr. Zein, the ophthalmologist, we got the most interesting news. Kinsley no longer needs to wear her glasses. Just previous to going to the NIH our local ophthalmologist had suggested the same thing, so we were interested to hear about Dr. Zein would say. Turns out he was right (which we are glad to know). Last year when we went, Kinsley's vision was measured at about -1.25 in one eye and -2.0 in the other. This is somewhat nearsighted and glasses could benefit. However, as MEB goes, children tend to get progressively more and more near-sighted as time goes on. When adding that knowledge to the already near-sighted measure they were getting, glasses seemed like a good idea.

However, at this visit, Kinsley's eyes measured at a -0.65 in each eye. Dr. Zein said in normal circumstances a prescription would never be given out for this. He and our local doctor both said that there is a margin for error when measuring the eyes, so this likely explains why the numbers are better than last year. However, I'm also aware God could have easily helped them out if He wanted to. Either way we're just very thankful that instead of getting worse, as was expected, her eyes either remained the same or got better. We were also told a normal reading for MEB would be something like -4.0 or -5.0. So once again, thank you Lord for your provision in this area!

There is one possible concern with Kinsley's vision. Another concern about the eyes with MEB is possible retinal degeneration as time goes on. This would eventually lead to blindness and there is no cure for it right now. After looking at K's retinas, Dr. Zein said he saw something which could be a sign of retinal degeneration, but could also be nothing. The only way to know for sure is through a more invasive test called an ERG. This is a test she will have to be sedated for, so it will happen in Little Rock in August. Please be in prayer about this for us. Right now we are choosing not to worry because we have no real reason to be worried. We're just giving it to God and trusting that no matter the result of the test, He will provide just as he has all along this journey.

Other than that, we had a nice visit to DC again and got to enjoy some sightseeing, walking in great weather and Kinsley's first carousel ride which she thoroughly enjoyed. Here are a few pictures:

Flying to DC (she was so good!)

Being examined by Dr. Bonnemann (she was not as good!) ;)

Riding the carousel on the National Mall

Sightseeing after learning the glasses were no longer needed!

In other news I wanted to let you know that the behavioral therapist we hired has been so helpful and Kinsley's therapy sessions have been SO MUCH better. She tolerates so much better now and is continuing to make progress. We're so thankful. Thanks to all for prayed about that for us!

Also, here's a newer video of her using the walker at home. Of course she's wearing the same outfit! Enjoy!

*One very easy way to help fund the research is by using amazonSmile.com when shopping on amazon. If you sign in to amazonSmile then you can choose a charity or organization to receive a portion of the money you spend on amazon. Very simple. Just choose CureCMD and you will be helping to fund the research every time you shop on amazon! And who doesn't shop on amazon?

"That the works of God may be displayed"

1 As he passed by, he saw a man blind from birth. 2 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him."          

John 9:1-3

When I read this passage I am so strengthened. I like to change the wording so that it's not about a man born blind, but instead about a little girl born with muscular dystrophy and brain abnormalities and weak eyes who also developed seizures. Nothing she nor we did caused this to happen. Instead, she was brought here so that the works of God might be displayed in her. 

Now, Jesus miraculously healed that man born blind. Has that happened to Kinsley? No. But does that not mean God is not working in her? Absolutely not. He has blessed her body so that it overcomes that muscle weakness and grows stronger daily. He led us to the best therapists and blessed them with the knowledge of how to work with Kinsley in just the way she needs. He has given her brain the ability to learn, problem solve and figure things out. He allows her seizures, but has not allowed them to stop her development instead giving her room to grow and flourish.

So, thank you, Lord! You are to be praised! And thank you, all who love and pray for Kinsley. You are helping so much with every prayer you say. Now, watch and see the works of God displayed in Kinsley:

Kinsley Standing Independently!

Kinsley cruising! (And this is a couple of months old. She is much faster and steadier now.)

Kinsley walking with a push toy!

Kinsley walks a few steps with assistance (but only a little)!

Obviously she still has work to do before she walks independently, but we are AMAZED at the progress she has made in the last several months. This time last year Kinsley couldn't even push herself up into sitting! And look where she is now. We're so thankful.

In other areas of development she is progressing as well, her fine motor control is improving, but that is more difficult to show you. She has gained more hand strength, is starting to isolate her fingers more often, she's much closer to using a pincher grasp consistently and her control with putting objects into small slots or spaces is improving greatly.

Her language skills are improving as well. She is now using three signs (inconsistently). She's great with the sign for "eat". She uses "more" very consistently in her swing because swinging is one of her favorite things ever. In other areas she will use "more" when reminded. We are also working on "all done" and she has copied that movement a few times. She understands what it means, but using the sign is not as exciting to her since it often signifies the end of something she likes.

She is also understanding more phrases and words. She's following more directions and showing more and more understanding of what she is supposed to do to complete any task at therapy after only a few reps of being shown how.

We are so thankful.

We, of course, have our struggles as well. We've struggled with many tantrums and fits, usually at therapy, for the past several months. Nearly every therapy session would be full of crying, screaming and little work. It's not fun. Not for Kinsley. Not her therapists. And not for her parents. So, we've recently added a behavioral therapist to our mix to help train me and others in ways to help Kinsley tolerate the activities that she does not want to do (any new, hard or unfamiliar tasks). The behavioral therapist spent some time observing and then this past week we began to work on implementing the plan she is forming for Kinsley. It's early to tell, but I am feeling very confident that this will be a wonderful help to Kinsley and to us. Thankfully, for the past month Kinsley already seemed to be showing some maturity and growth and more ability to tolerate, so that therapy has been much easier for the last few weeks. It's a wonderful reprieve, but I'm prayerful that this behavior plan will be something we can use going forward when harder tasks begin to come again. Please be in prayer about this topic specifically. 

My last request is that you pray for us as we take Kinsley back to the NIH in a couple of weeks. We are excited to show them all the progress she has made and are prayerful and hopeful that we will learn more about the progress being made towards the treatment they told us about last year!

Now enjoy some recent pictures of our sweetie:

She loves to be outside.

Dressed up for church in a beautiful dress (Thank you, Kristin Tomes!).

In the flower girl dress I wore in my Aunt Lisa's wedding.

Loved seeing our cousin, Ellie, recently!

Easter girl

Happy 2nd Birthday, Sweet Kinsley Girl!

Kinsley Abigail, Born December 20, 2011 at 12:38 pm

How can it have been two years since this precious girl came into this world? In some ways time flies and it feels like just yesterday that I first held her in my arms. In other ways this journey through understanding her diagnosis and getting TONS of therapy and watching each milestone and inchstone (as many special needs parents call the tiny steps of progress in between each milestone) slowly come has felt like a lifetime. My life is TOTALLY changed because of this sweet girl, but I wouldn't have it any other way. Kinsley is the brightest little light shining for us when we go through the hard times. It's wonderful to think that through all the hardship that comes with Kinsley having MEB, that Kinsley herself is that one that makes it all worth it and all ok. She is the hardest working, strongest willed, little miss independent, beautiful girl who we are SO proud of. So on this second anniversary of her birth I want to just take a moment to celebrate all that she has accomplished in her little, beautiful life this past year.

December 20, 2012

At 1 year old Kinsley could:

• Hold her head up in any position
• Sit unassissted
• Roll from belly to back
• Roll from back to belly
• Bear weight through her legs
• Grasp objects
• Bring objects to her mouth
• Bang two objects together
• Track objects with her eyes
• Smile socially
• Laugh at funny sounds
• Recognize familiar songs
• Understand cause and effect toys
• Respond to her name (inconsistently)
• Make vowel sounds and blow raspberries

December 20, 2013

At 2 years old Kinsley can:

• Do all of the above
• Achieve sitting from laying down on her belly or on her side
• Crawl
• Stand with support from a wall, at a table, couch or standing toy
• Stand without support for over a minute (inconsistently)
• Stand up from a bench unassisted and remain standing for 30 seconds (she did this for the very first time TODAY at therapy and she did it TWICE!)
• Walk 3-5 feet with support
• Hold and drink from a sippy cup
• Drink from a straw
• Self-feed with hands
• Self-feed with a spoon (inconsistently)
• Clap her hands
• Remove rings from a ring stacker
• Put rings back on a ring stacker (inconsistently)
• Put objects into a container
• Remove objects from a container
• Understand more complex cause and effect toys
• Babble many sounds including any combination of mamama, dadada, bababa, papapa, or lalala
• Reach for me when I hold my arms out
• Understand words or phrases like, "Give kisses," "Look at Mama," "Up," "No," or "Where's Daddy?" and (inconsistently) follow the command if one is given
• Sign the word "Eat" (a new skill she mastered over Thanksgiving break and one that she uses VERY consistently!)
• Use a switch (communication device) to ask for an object
• Maintain eye contact (when she wants to)
• Play Peek-a-boo
• Recognize (very) familiar people and smile at them

I am sure there are more accomplishments I am forgetting. I also realize for a typical 2 year old this is not the list of accomplishments you would be looking for. However, this list is not to elicit any pity or saddness from any of you wonderful readers. This list is something we are SO proud of. This little girl works SO hard. Not many 1 or 2 year olds are constantly asked to work out and do tasks they don't want to do. Kinsley is and although she's not afraid to complain about it (she definitely isn't delayed in being able to throw a fit like any 2 year old might), she does the work anyway and has made SO MUCH progress. And most of that list was accomplished in the last six months. She has made such steady progress since she began to get herself into sitting and we couldn't feel more blessed. We are well aware that things could be so much worse for our sweet Kinsley and we just want to PRAISE GOD that she can do all that she can and that the progress is just continuing.

Looking back on how much Kinsley has learned in the last year I am reminded of the verse I mentioned in my first blog post about Kinsley written a year ago:

“‘For I know the plans I have for you,’ declares the Lord, ‘Plans to prosper you and not to harm you, plans to give you a hope and a future.’” Jeremiah 29:11

One year ago when I first told you all about Kinsley and what her life may be like we did not know what the future held and for many things we still don't. But this year of progress and accomplishment has shown us that God is with us! Kinsley's future is blessed because of Him. He has given her SO many abilities already that we were never sure she would accomplish and I fully believe that He will continue to bless her in the years to come. However, I feel the need to add that I know that even if or when the accomplishments stop, God STILL has a plan for her and I know it will be a plan to prosper her. My prayer is that the coming year and years will be filled with continued blessings for our Kinsley girl, but even when the hard times come that we will continue to lean fully on God and trust His guidance in everything.

So, happy birthday, Sweet Kinsley Girl. You are truly an inspiration to your mama. I love you, sweet girl!

PROGRESS with a capital P-R-O-G-R-E-S-S

Well, the past 2 and a half months have brought some wonderful things to Kinsley's life (and therefore ours). Kinsley has made some wonderful strides in her physical abilities and I am so excited about them! In my last post I told how she had learned to push herself into sitting and had done it a couple of times. I am proud to say she has continued to do so and it is no big deal for her at all anymore. It seems that this process being done over and over by her has been a huge help for her. It has strengthened her arms, but also her core and she now is able to get herself up on her hands and knees and can CRAWL forward! Ok, so she only goes about a foot or two before laying down, but it is still AMAZING progress for her. There were definitely times where I wondered if she would get this, but we see it happening! It's wonderful to see her so motivated to move. She does still fatigue easily and this is partly why she doesn't go far, but also it's still an uncoordinated move for her and she's still figuring out the whole reciprocal process of moving one arm and the opposite leg at the same time. Usually at this point she moves one limb at a time, but it's improving and she does very, very well with assisted crawling now (where we hold her legs and move them as she moves her arms forward). Anyway, we're so thankful to the Lord for this ability that she is developing. Her PT told me she believes by Christmas we can have her crawling all over and getting into everything! What a wonderful Christmas gift that will be. I have been waiting so long to see this sweet girl with some mobility and it is SUCH a blessing that it is (nearly) here.

In other progress she has also made great gains in her standing abilities. She has stood unassisted for 10 seconds! That is her max right now, but we've had several other 5-9 second bouts as well. She received some new braces to wear while she is working on standing. They help keep her feet stable as she seems to have weak ankles and she was standing on both the inside and outsides of her feet at different times (very wobbly feet). So, we got some AFOs and the first time she tried them was the first time she stood unassisted for any time at all. They are a great help to her and it's so exciting to watch her make this progress! She's also done some very long 30 second stretches with support only on her feet (she supports her whole body except for her feet which we hold down for her - this is the hardest assisted standing there is). It's awesome to see her doing so well! She is still very weak in her core and this makes it difficult for her to balance, but she is doing so much better than before. PTL!

Kinsley has also begun to use her spoon to help feed herself. She is so cute doing it too. I always make a big deal when she does the whole process of picking up her spoon, putting it in her mouth, getting the food off and then returning it to the bowl. She loves that and acts so pleased with herself. It's wonderful in two ways. First that she's making progress with self feeding and second that she is enjoying and understanding praise from others. She does not scoop the food herself yet and her grip can be iffy (sometimes the spoon gets turned over), but still this is big stuff for her and she keeps getting better at it. :)

That being said I still dearly wish for all of your prayers for our sweet girl and for our whole family. Kinsley is doing so well in her progress, but she will forever be behind. I know this, but I struggle to accept it. It's very hard as a mama to watch your child struggle and be "different" from other children her age. One thing that is starting to show itself more and more are some symptoms of autism. We were told this happens with some children with MEB (because of the brain issues). Kinsley is VERY delayed in receptive language skills and her social skills as well. It is difficult to understand. She can sometimes be very involved and engaged with me or Luke or her grandparents, etc, but very often she seems to be in her own world as well. I think for me this is the hardest part of this whole disease. I just want her to have a happy life, but I want that happy life to include us bringing her that happiness. I just want the very best for her, so I feel strongly about getting her all the therapy and help she can receive. Her developmental therapist and I are working on new ideas and skills to help her with these areas. Her speech therapist is too. And it all helps, for which I am thankful, but it is also very hard. It feels like a constant battle to get her attention at times, but at other times she does great. I try to focus on the positive, but I'd love prayers for this to get easier or at least for there to be noticeable progress in these areas. We're also trying to decide what further therapies (like ABA) may be appropriate for Kinsley in the near future, so please pray for us to have wisdom to make the right choices for our sweet girl. For we know that "the prayer of a righteous man is powerful and effective" (James 5:16b).

I think this is all I will post for now, but I'll leave you with some fall pictures of our Kinsley girl (and her crawling progress!)

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!

Lately

So I realize it's been FOREVER since I've posted. Life is just constantly busy and every time I found myself with time to sit down and type I've decided I'd rather read, watch Netflix or nap. Not to mention that I spent the last two months trying to get 60 hours of professional development in by May 31 while Kinsley napped just to keep my license up to date so I can maybe sub once a month or tutor or SOMETHING next school year. Of course I should have done many hours in previous months, but I was a tad distracted. But I digress.

Kinsley has had a busy month and a half since I lasted posted. We added a third medication for her seizures at the beginning of May in an attempt to get them totally under control. She started taking a steroid which had been shown to work well with other kids with similar brain abnormalities at stopping their seizures. We were told it would probably work to stop the spasms while she was taking it, but that there was a 40-60% chance they would reoccur as the steroid was weaned. Unfortunately this is what has happened. She took a full dosage of the meds for two weeks and we saw a nice 10 days seizure free. We saw Dr. Sharp, our neurologist and had an EEG during this two week period. Her EEG at the time looked "pretty good" to quote the doctor. It was not a normal EEG reading, but he basically said it looked as good as it could without being normal. He said there was no sign of the spasms effecting her brain waves at all. That was WONDERFUL news. She was only showing a few spikes on her occipital lobe during sleep which several other MEB parents have told me is similar for their children. Those spikes are very minor and do not require any extra help. Also despite these happening during sleep he said her sleep waves look great otherwise and she has been sleeping very well of late which we are thankful for.

The main issue with this good EEG reading was it's possibility of being a temporary thing. We were told at that appointment that we would wean the steroid down for five weeks and then go back for another EEG to see how things looked without the steroid in her system (in case you are wondering, she cannot stay on the steroid permanently because it's not good for anyone to do so). So this past Saturday was the last dose of steroids that she would take. As we've weaned the steroid we have gradually seen the spasms become a bit more frequent again. There does not seem to be a pattern to when they occur. We've seen them five days apart, then two days apart, then three days, etc., and now it's been seven days seizure free again. We're very happy to not see them so often, but obviously we want them gone for good. Unfortunately Dr. Sharp did tell us it is possible we will never get them under control completely. But he did say as long as they stay infrequent and her EEG continues to look good like the last one then we can be happy. Obviously it would be best for everything to be normal, but this would be the next best thing. So our next step is another EEG and appointment with Dr. Sharp this week to see how things look now that the steroid is totally weaned.

As for Kinsley's progress in development we continue to see slow, but steady gains for which we are always grateful. One wonderful development in the past month has been Kinsley's first signs of understanding some language! Yea for receptive language progress! About a month ago now Kinsley started to respond to the words, "Give me kisses," without any puckering from us as a clue. She just leans right in and lays one on you. Sometimes it's closed mouth, sometimes open and even occasionally with a bit of tongue. Obviously, we're not fans of the tongue kisses, but we just make sure to keep our mouths closed! Now she doesn't do it every single time we ask, but she has done it sooooo many times now that there can be no doubt that she understands it! :) Then a couple weeks later she seemed to begin to understand when we say, "Yea, Kinsley! Yea!" She's been working on clapping for a few months now and has been able to randomly do it since about February, but only when she felt like it. So whenever she did it I would always say, "Yea, Kinsley! Yea!" And we would clap along with her. So suddenly she started to get it. We would be working on a skill for therapy and when she would complete the skill I would say, "Yea, Kinsley," and start clapping and a few weeks ago she began to copy me with the clapping which was very exciting to see. So then I would just be holding her and I'd say it again and she now will (sometimes) clap just hearing us say it! I know this may not sound like much to some, but for us it's wonderful to see the beginnings of her understanding us!

Clapping girl

Physically the progress is still slow and we have not reached crawling or walking yet, but she is still getting closer and closer. She can maintain her hands and knees position for longer periods of time and even tries to reach for things while in this position, which is an important step in crawling forward, obviously. She also will rock her body back and forth which is a step before actually moving forward as it helps her body feel the motion of bearing her weight first in the front and then the back over and over. Walking wise she has been using a walker in therapy! She by no means can use it on her own and requires trunk support and for her hands to be held or tied to it (I know that sounds terrible, but they're really just wrapped). As I've mentioned many times before, she hates having her hands manipulated so this is something we're slowly having to accustom her to, but once again she is making progress! She's also making progress towards independent standing. We can hold her around her knees and have her support the rest of her body on her own. The lower we get our hands the closer she gets to independent standing! Please continue to pray for these endeavors for her.

First time trying out her walker. :)

She has also begun pool or aquatic therapy. We've gone twice for about thirty minutes each time and she seems to really enjoy it! She loves to splash with her hands and last time she literally splashed for thirty minutes straight. Her arms must have been sooo tired afterwards. She will also kick her little legs under water and just overall seems like she could be a great little swimmer eventually. For those of you who are wondering why pool therapy helps, it increases the resistance against her muscles, but takes gravity out of the equation, so she doesn't have to work as hard, but gets more benefit to her muscles. :) Yea! We also can work on standing on the steps in the pool and get the same benefits of making it an easier task for her.

Kinsley has also made great progress in self-feeding. About 80% of the time now she will feed herself finger foods right from her tray or plate! Yes! This is a great skill (and makes meal times easier on mama)! I'm still having to feed her anything that comes from a spoon, but I'm ok with that for now and she's making slow progress towards doing that herself too. She will pick up the spoon very rarely, but will take it from me sometimes and put it in her mouth, so progress. :)

Good self feeder! Good as in "feeds herself", not good as in "has good aim". ;)

In the vision area, we have seen a return of the eye crossing in the past few weeks. This was expected, though we were hoping not. This probably means either another round of botox to try one more time to see if it could help permanently or the other option would be eye muscle surgery. We'll see our eye doctor in July to decide. Kinsley did get her glasses a couple of weeks ago, though and I must say they are ADORABLE! At first I thought she was going to mess with them constantly as she did just that for the first little while, but honestly within one day she seemed used to them and really leaves them alone quite well. We are very pleased by that. As for how much they're helping? It's hard to say. Many, many people have commented that they think she has noticed them much more and has been paying more attention to what is going on around her. It's hard for me to tell. There have been times when I thought not, but then others where it seemed quite clear that she was seeing much further than she had before. So, we hope they're helping. But either way, we know she will always need them, so at least she is getting used to wearing them already and we know as she ages and develops more ability to move they will be more useful for her then.

Cutie with glasses

In the last couple of months our baby girl has grown into a toddler for sure. She looks so much older and her limbs are soooo long. She's a tall girl. :) Her are some pictures lately. (I'm not sure why some of the pictures are squished, but blogger won't let me try to format them. :/ Sorry!)

We continue to be amazed and feel so blessed by God at how well Kinsley is doing considering all the odds against her. We feel overwhelmed with love and support from all of our family, friends, and all you out there praying for our sweet girl. Thank you all!
1 Corinthians 15:57, "But thanks be to God, who gives us the victory through our Lord Jesus Christ."