We've had a very relaxing few days in Branson with some of Ben's family. Philip continues to have good days and bad days. Yesterday was his best day in weeks. He was able to get around on his own a little bit and actually did some spinning though not as fast as he used to spin. He was also more alert and less shaky. That's a wonderful Christmas present for him! He enjoyed the freedom and enjoyed laughing with all the family.
Our family hopes you and your family have a wonderful Christmas day. Enjoy your loved ones and time to reflect upon the most perfect gift ever given, Jesus!
We've had a very relaxing few days in Branson with some of Ben's family. Philip continues to have good days and bad days. Yesterday was his best day in weeks. He was able to get around on his own a little bit and actually did some spinning though not as fast as he used to spin. He was also more alert and less shaky. That's a wonderful Christmas present for him! He enjoyed the freedom and enjoyed laughing with all the family. Philip loves buses, so I decided to make a bus cake for his birthday party. I saw one that looked relatively easy online and tried it. It did turn out cute! Philip loved it! I don't think he could quite figure out if he should play with it or eat it. He could tell it was a cake but it looked like a bus. You could almost see him trying to contemplate that one. I did ice a little cake with 4 candles for him to blow out, not knowing how much saliva we would be dealing with! He did good though, blowing out the first 3 in one try. He was excited (because everyone else was) when he got the last one blown out. We got Philip a die cast bus, that has pullback action and doors that open and close. Hours of entertainment for Philip! He figured out the pullback action way sooner than we thought he would. He usually only focuses on the concrete features and misses the abstract ones. It was a fun time with some family over, as well. The great news has to do with your prayers being answered. Thanks for praying! His extended EEG study has been moved from April to January 6. That's just a couple of weeks away!!! The Lord is good to give us this testing so soon. We will plan for Philip to be admitted into the hospital for 4-5 days. They will place probes on his skin around his head (they didn't shave his head last time). Each probe has a wire connected to it. They will then wrap up the top of his head sort of mummy style to help the probes stay on. Then each probe will monitor the electrical activity in his brain for up to 5 days, charting seizure activity in which regions and sections. We're not sure that it will take all 5 days but we are planning for that stay. From this information, the neurologist and probably epileptologist will be able to discern from which sections his seizures are coming, how often, the duration, etc. They can then make informed decisions about the best way to treat him to help the seizures to stop. Our neurologist will know from this if he should turn Philip's case completely over to a pediatric epileptologist, a doctor who specializes in seizure activity. We hope they can get the information they need to help him. We also hope to speak with specialists for our education on seizure types and understanding seizure activity. I'm so thankful we could have this testing done before our third baby comes--Lord willing in February. That would have been much more difficult logistically.
I will have to say that Philip had a pretty good "Happy to you" today. He enjoyed singing the song to himself all day, and singing with me when I sang it to him. He almost had the switch to 4 when asked how old he was by the end of the day. He can hold up his 4 fingers which is good since he could never get 2 and 3. We opened his birthday cards from Grandma and Poppa and Granny. Aunt Angie dropped by with his birthday gift, but we will have cake and open presents on Thursday. Who doesn't mind having their birthday celebration extended? I'm pretty sure Philip won't mind.
He had a good day seizure-wise as well, only a couple larger ones. Everything else was pretty normal. He's in bed now, getting to use his new weighted blanket. It came in the mail today. This is a specially made blanket with synthetic pellets in it that make it about 7-8 pounds. It can help him to be calmer and help him to process sensory information. He has always liked lots of blankets when sleeping and when we did our research and found that weighted blankets and vests can help children with autism or sensory issues, we decided to get a weighted blanket for him. We'll see how much it helps him. Thanks to everyone who is praying for us! We know the prayers of God's people make a difference. We have learned that when we change a medication, we need about a week to really assess the difference. During a transition week, Philip is grumpier, a little more aggressive, sometimes a little out of it, mainly because the medicines he's taking are medicine for his brain. It's got to adjust and does so a little slowly. Transition weeks are harder weeks, especially if they're busy weeks. Thankfully, this one is less busy than last week and we'll take it. Ben works today and tomorrow and then begins his Christmas vacation so we are looking forward to Daddy being home and Grandma (Ben's mom) coming on Wednesday to spend Christmas with us. Today, Philip has had only a few larger seizures and has played and read books happily. Both of my kids nap longer on Monday just because Sunday is a different routine for them. Since I am 29 weeks pregnant, I'm thankful for a little catnap myself. May the Lord richly bless you and your family today. We are richly blessed with so many things. Praise the Lord!
Sometimes it seems many appointments fall at one time. That's the way this week has been. It has been busy. Philip's speech therapist today asked me, "What do you do with your free time?" :) We don't always know why it falls this way but we just keep going. Today's appointment was with the ophthalmologist, a regular checkup for his farsightedness. Good news! His eyesight has improved. Usually children's farsightedness gets worse until about age 7 when it begins to get a little better but his has improved now. Yeah! We get excited over any improvements. He hates to have his eyes dilated. I guess most people don't really like it but because he doesn't really understand why, it is hard for him. The harder thing is that Ben nor I have ever had it done so we can't even know what he's going through. We brought along some sunglasses with a camo design that our neighbor just gave to him and put those on instead of the paper ones. He kept them on all afternoon without even wanting to take them off. We just think he likes to look cool!
Although his eye appointment went well, he had a pretty unsteady day. He fell a few times so we had to keep his helmet on and that saved him from a few bumps later in the day. We're still all getting used to it. To be honest, it's hard for me to see him have to wear it. Part of the process of having a special needs child is accepting that your child is different and that's okay. When it comes to the helmet, it just makes him stand out so differently from other children that it's a glaring reminder. It doesn't help that he really doesn't like it right now. But the Lord knows our weaknesses and gives us grace as we need it to deal with all things he brings our way. I'm just praying that we can get the problems with balance straightened out and he won't have to wear it. We met with Philip's neurologist today. He was reassured after seeing Philip. He had been thinking by our last conversation on the phone that he might have a malfunction with his shunt, causing problems with his hydrocephalus. There was no indication of that though, which means the seizure activity is probably responsible for some of the changes. Because of that, he is going to try to move up the EEG monitoring from April. Please pray that he can. It wouldn't necessarily give us all the answers but more information to help make decisions. We will also raise the dosage on his third medication. He is still taking a lower dosage of that particular one and it has had little negative side effects so it seems a good option to try to get more control of the seizures. Lastly, he suggested a helmet for Philip this time and put in the request. Before we left the clinic, Philip was fitted with his helmet and brought it home today. It will help him to avoid head injuries when falling. He doesn't like it right now but will get used to it, I'm sure. He won't have to wear it all the time. I'm sure we'll include a picture soon.
Today we met with Philip's speech therapist as usual and she performed a swallow study. She had him eat several different foods with different textures and listened to his throat with a stethoscope. She said she heard nothing to be concerned about. He even had a small seizure while she was listening which was ideal for testing purposes. She thinks that he is swallowing fine and not aspirating fluids as much as she thought. Praise the Lord for that! It's nice not to add another concern to the list. We'll see the neurologist tomorrow and go from there. Philip has seemed to gain just a bit of control in balance back. He still falls some and you can tell his movements are uncoordinated but he is able to get up and play a little more. Returning to the previous dosage on his medicine may account for some of that but we aren't completely sure. We're thankful for it anyway and hope it continues.
By the way, Ben activated the RSS Feed for the blog. It's on the right side of the website. If you would rather just be notified when I post something new, you can sign up for that. Weekends are busier for us so most of the time I won't include a post over the weekend. I heard from Philip's neurologist today. We will return to the dosage strength of the medicine we had tried lowering. We also have an appointment with him on Thursday. He and I both were glad that was already scheduled. He will do his regular check up exam and then decide what the next best step will be for his increased unsteadiness and seizures. At his speech therapy on Wednesday, his speech therapist will do a swallow study. She believes he is aspirating fluids at times and wants to perform these tests to try to figure out for sure. The main concern with this would be developing pneumonia. The neurologist is interested in the outcome of this test. Because of the imbalance issues, we will probably also be seeking out a physical therapist to help him. With these changes coming at us, sometimes its hard to know exactly what to do. The unknown is generally the hardest thing to fathom and usually the easiest thing to be afraid of. Fortunately for us, there are no unknowns to God. He has already shown us that He is guiding and providing. We know his grace and strength every day even though there may be hard times. Thankfully, Philip is happy and content for the most part :) and looking forward to his "Happy Birthday" next Tuesday. He sings "Happy to you" just to practice!
Well, just as I thought yesterday, he woke up from his nap much better. It often happens that way. I'm so thankful for naps!!!! He didn't have many seizures yesterday evening. Philip loves to watch Wheel of Fortune, snuggled up in a blanket. Along with the beginning of the seizures in April, he seemed to experience a regression of cognitive skills. In the fall of 2012, he knew almost all of his letters by sight and numbers 1-9; now he's a little foggy on most of them. There are a few he still recognizes though and those are his favorite Wheel of Fortune letters. He'll see the A's come up and shout "A." He also is a mockingbird, technically called echolalia. So, he loves to repeat the letters as the contestants call them out. But, his all time favorite part of the show is when Vanna says, "Bye Bye" at the end. He waits for it. He says bye back and waves. That is so funny to us!
Today was a different day all together. He only had one or two smaller seizures this morning. We've had snow here in OKC so my husband's work had delayed hours this morning. That meant Daddy was home for part of the morning and we had a good time singing many different songs and playing. At one point, Ben was just whistling a song and Philip began to fill in some words. That's evidence that his brain is engaged! He has a new-found love for the song, "Jingle Bells." 'Tis the season! He can't get most of the words out but he loves the "Hey!" at the end. He did seem to be on top of his game this morning. Now you might see why we just take each day as it comes because it can change from one to the next. We haven't yet figured out what brings these changes about. Philip still seems very unsteady in his balance; at first it didn't seem to affect him emotionally or mentally but now he seems more afraid to fall so he chooses to sit down and do most things. Unfortunately, that means he can't spin anymore. For those that know him, you know that's hard for Philip; he loves to spin. However, he falls most every time he tries these days. Please pray we will be able to figure out this newest development and take care of it. Philip has experienced more seizures today (12/5) than normal. I used his rescue medication for the first time. It is a dissolvable pill we can place in Philip's cheek when he has a long seizure more than 3 minutes or clusters of seizures lasting more than 20 minutes. I'm not sure how that will affect him but he is napping now and sometimes the day can do a 360 after a nap. I am in regular communication with his neurosurgeon and am awaiting a callback from him. We'll talk about medication changes and what to do next. We recently tried lowering a medication dose for Philip because the current 3 medications seem to be making him very unsteady. We'll probably be changing that again because he has been having more seizures. On these days, he just likes to sit and look at books, watch a video or sit on the floor and play with his cars. He also likes to cuddle with Mama or Daddy more on these days and growl at Joyanna when she gets in his bubble.
|
Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
Archives
March 2024
|