So, I suppose it's time to update everyone on how things have been progressing with Kinsley for the past month. Things have been busy and somewhat up and down progress wise. Let me start with the seizures.
Kinsley, unfortunately, is still having her spasms. We've spent the past month fighting with them trying to find the right dosage to eliminate them completely. Sadly, we still haven't found it, but we're still prayerful and hopeful that it will come soon. After we began her meds we were very hopeful because immediately we saw a decrease in the spasms and they were less intense as well. After about one week on the lowest dosage they stopped altogether for nine days. We were (incorrectly) feeling great about them being gone. After the nine days they came back and have been continuing on and off for the last several weeks as we have been gradually increasing her dosage. At this point she is on the second to highest dosage and has been for six days. She had spasms the first day on it, but not the next two. Then she had a fairly intense cluster and now we haven't seen any again for the past 48 hours, so maybe this dosage will work. We'll continue to wait until we see more, but at that point we will increase to the highest dosage. I've been told you need to give the highest dosage two weeks time to stop everything altogether before trying anything else. So, at this point, we're still playing the waiting game. PLEASE, pray for these spasms to stop and for us to find the correct dosage soon. Infantile spasms do NOTHING to help a child and can cause serious regressions and eventual mental retardation. The longer she has them the more it worries me. As she already has so much other horribleness fighting against her development I really want to cut this problem out!
That being said, we must give praise to God that so far we really have not seen regressions in Kinsley since the spasms began. Her therapists say the same thing. The main things we've noticed is she does have some increased weakness in her trunk (like she used to have, but had gotten past). She became more wobbly while sitting and in supported standing again. Additionally her neck control is a bit weaker. However, it never reverted all the way back to not working and already in the past week or so I've seen both her neck and stomach muscles increase in strength again. Her therapists do not call these regressions as they are not problems in forgetting how to do those things, but rather as a result of muscle weakness. One therapist suggested that her medication may actually be contributing to the problem rather than the spasms and I have read that it can cause low-tone, so it seems likely that she has had these problems due to the meds. But, like I said, she's already improving in those areas again, so we are very thankful for that. Other than those things, Kinsley has not lost any of her skills. She is still (slowly) learning more and more and is still our happy, giggly little girl.
I am pleased to tell you that (so far) Kinsley's Botox injections in her eyes were a success! She has achieved good alignment of her eyes and things look great for now. We are still patching her left eye two hours a day, five days a week. We will continue this until her next check up in April. At that point it should be apparent whether or not her alignment will be permanent or just temporary. Either way, we are enjoying her improved vision for now!
|Eyes before Botox|
|Cutie after Botox|
In terms of progress, I'm proud to say Kinsley has mastered drinking from her sippy cups all on her own. She can hold her cups (with handles or without), bring them to her mouth and drink as much as she wants. This is something I worked on with her on my own. She began working on it at the beginning of December and at the point we were working on holding her cup with handles in two hands while lying down or mostly reclined. Slowly we worked to doing it while sitting on the couch or in my lap. Then while in her high chair. Once she mastered each of those we moved to using a cup with no handles too. I'm proud to say by the middle of February she had it all down pat! She's a hard little worker. We've also been working on self-feeding finger foods. Sometime around her birthday she began to take large pieces of bread from me on occasion and move them to her mouth (actually sometimes kinda throw it at her mouth). Sometimes they made it in and she would eat it, other times it may fall down. At this point she gets the food to her mouth 95% of the time and if she's struggling to get it in she now (most of the time) will continue to work at it (whereas before she would just let it fall and not care). Additionally, she has become MUCH better at picking it up from her tray and eating it all on her own (before I usually had to hold it up in front of her). Right now she can only feed herself soft finger foods that are about quarter sized or larger (bread, cheese, crackers, etc). Puffs and smaller, harder foods are still difficult for her to grasp and they end up just moving all around the tray or if picked up being too hard for her to get into her mouth. But we'll keep working on it! She cannot use a spoon yet, but we've been working on that too. That's a work in progress which I think will take quite a bit of time, but she will sometimes take the spoon from me and put it in her mouth, so progress has begun.
|Sippy without handles!|
|Sippy with handles!|
These are all OT skills and I feel she's made the most progress in this area of late. In the last few weeks her OT sessions have changed a lot. She's still working on arm strength there, but with harder tasks as her arms have gained so much strength in the past couple of months! But where we used to work on reaching (away from her body, up high, with one hand, with two hands, etc.) we have moved on because she's achieved those skills very well! She is now working on putting things in and pulling things out, pulling off, pulling apart, and other such tasks which are much more age appropriate, so that is all very exciting. Not to mention, she has by no means mastered those skills yet, but she has taken to them very well and is making great progress already!
In PT we've not made much noticeable progress, but she is definitely improving. Her arms and legs are both getting stronger and stronger which is very important. As I mentioned before about the increased weakness in her trunk, that's made it harder to make progress in standing. She needs a very strong trunk in order to stand without support because right now she's too unbalanced. So please pray for that to continue to improve and quickly. She is slowly making crawling progress too. We've begun to work on belly crawling with assistance and so far she's not a huge fan and it's hard work for her, but she is crawling across the mat (with assisstance like I said), but that is more than we were doing before and I'm excited to keep working on it and see where it takes us.
|Working on hands and knees at therapy|
Speech therapy is an area I would like more and more prayers for please. Kinsley does great work at speech in making choices with her hands, turning to pay attention to sounds and sometimes her name, listening to her speech therapist talk to her, smiling and paying attention and other such things. However, we've made no progress towards her understanding words yet or towards talking at all. She is capable of making many sounds, but she usually only does it when she has nothing to play with (like while riding in the car, sitting on my lap, laying on her changing table, or in her bed, etc.) or if she's mad. Therefore, she doesn't make many sounds while at speech therapy. So that makes it hard to work on. Also, she does not imitate many sounds yet. The only things she will imitate are blowing raspberries, the short a sound and a strange hyperventilating sound she makes when she's excited (like the h sound, but with heavy breathing). And of course, she only imitates them when she wants to, so not always. Beyond that she will just watch you and smile while you say sounds or else ignore you. So basically, we're waiting on further development of her brain. No amount of therapy can force her to understand words—the brain just has to develop the ability. Also, imitation is a skill babies develop after time and her ST thinks Kinsley will still develop this skill, but it will just take time to come. So in the meantime we are supposed to keep making sounds to her, copy anything she says, sing songs, make animal sounds, etc., trying to build up her repertoire of sounds. I want to ask for many specific prayers that Kinsley's brain will develop more understanding of language. Thank you!
As for developmental therapy, Kinsley seems to be making more progress! She does not scream at her therapist for the whole hour anymore as she did when DT first began. :) She tolerates that therapy (and actually all of her therapies) so much better in the past month or so and we are so thankful for that. In DT, Kinsley practices her cognitive skills (as well as social, physical, speech, occupational and all) and we have been so encouraged by our DT's comments about Kinsley's abilities cognitively. She's by no means at age level, but our therapist has told us that Kinsley can do much more (and learn new things much quicker) than many other children she works with. She continues to be pleased by Kinsley's cause and effect skills, anticipation skills and recently of her understanding of objects being put in or pulled out of a container. Apparently it can take some (special needs) children a long time to understand that concept, but Kinsley picked up on it quite quickly, so for this we are also thankful.
|Putting blocks in|
I would like to reiterate how thankful we are for all of Kinsley's therapists. They are so sweet and loving towards her and they each are so positive about her abilities and believe she will continue to make great strides. We feel extremely blessed to have each of them working with her.
I don't know how much I can say that this life for Kinsley is hard. At times I struggle to be patient, waiting for the spasms to end or for Kinsley to understand her first word. BUT, despite how hard things seems to be at times, I cannot count how often we have things to be thankful for. Kinsley has a horrible genetic condition that causes physical and mental disabilities, but she grows, and learns new things all the time! She has infantile spasms and they haven't gone away, but she shows no regressions in her skills! We know not one other person or even anyone who knows someone else with the same condition as Kinsley, which can feel very lonely, but we have a wonderful support system of family, friends, and church family who all love our daughter and love us and keep us strong and prayed for through all of this. I also have a great friend whose daughter has a very different genetic condition, but which also requires so much attention, constant doctors' appointments, therapy and so much prayer. I hate that they are going through something so difficult, but it is SUCH a blessing to have someone who understands the heartaches and joys of a having a special needs baby. She is a constant help to me and I hope I am to her at times as well. (Speaking of this friend if you're interested in her daughter's story check out her blog here and keep baby Aubree on your prayer list too, please!) I say all of this to say, I hate this, but God is so GOOD! We are blessed beyond measure, even in the midst of this hardship. Romans 12:12: "Rejoice in hope, be patient in tribulation, be constant in prayer." This is my new verse to focus on for now. It very simply states what I need to be doing right now. Please join me in that constant prayer!