Radio Show

Tonight Billy and I are going to be sharing our journey with Morgan on the Christian Radio Talk Show, The What Now Show. It starts at 7:00 tonight and you can listen live online at KBEYFM.com. If you miss it, it will be recorded and you can go to TheWhatNowShow.com/podcasts.

Learning as we go

We are learning as we go along each day with Morgan. Learning about why she does certain things and has certain types of behavior, and what to do in that situation. This is so challenging, mostly because she does not talk and can't tell us what is wrong. Also because she just had brain surgery, everything is changing in her brain, her body is having a hard time adjusting to it, so there are many behavior changes. For instance, today we went to my in-laws to enjoy a fun day with family, some of which we had not seen in a year because they live in Singapore. Morgan began screaming at the top of her lungs, holding her head, and crying hysterically. We thought she must be in pain because she has been holding her right ear, which is right near the incision. We almost took her to the hospital but decided to see how she was after getting home. We also gave her some Motrin. When we got home, she was still a little hyper but much better. Billy and I both looked at each other at the end of the day and both agreed that it must have been a horrible temper tantrum, the worst we have ever seen, which is really saying alot, (most of you know how our son Will was as a toddler). Anyway, we had to leave early today because we didn't know what was wrong and what we needed to do. She is obviously becoming opinionated and didn't want to do what we wanted, so she through a tantrum. Very sad for us, though, because we were looking forward to a fun day. Sometimes it is easy for me to have a pity party, wishing I could just sit back, relax, and enjoy time with family. Then I am reminded of how much God has blessed us, how she doesn't have seizures anymore, how we did get to enjoy a couple of hours of family time last weekend, and that today was by far not the worst day we have ever gone through.

It's Hot! Flushed cheeks after her daily late afternoon run

Long day

Today was a long day for Morgan and I both. We first had to go get Morgan's blood drawn. Her endocrinologist had ordered for her thyroid to be checked again. We had it checked last year and it was low. It was fine in January at last draw, so this is a recheck following surgery. Also, Dr. Stewart ordered some labs to check need for supplements. Morgan has had blood drawn many times before. Never, have we had a challenge like today. I had begun noticing at the last two doctors appointmtents that she was acting more anxious and crying when we went. Today, she was the same way, but very, very upset and crying loudly when we entered the lab. It was challenging and difficult to watch her be so upset, but it really shows that she is aware now of what is going on. Before, she would cry when they poked her but never knew what was going on until then. Today, she knew where she was and what was going on. So hopefully no more lab work for a long time. Then, she had therapy after this. After getting calmed down, she did very well. She continues to communicate with the pictures. After an hour of working with speech and OT, she gets PT. She was very tired by this time and didn't really want to participate. She wouldn't stand still to work with the PT. I told the PT that Morgan has really enjoyed jumping on the trampoline. She also seems to be very sensory seeking lately. The PT had the idea of putting ankle and wrist weights on her for sensory input. Great idea! Morgan was instantly calm and worked with the PT another 30 minutes. As for me, this was a long day on top of being up until midnight last night. No, not because of Morgan(she actually has been sleeping through the night, Praise The Lord). I was up cleaning out my closet. I have noticed having so much more energy now. Most likely for two reasons. First, I get a solid 7 to 8 hours of sleep a night now instead of waking up every hour or so to check on Morgan(like when she was having seizures all night long). Secondly, I have had a ton of bricks lifted off of me. I realize now how much the sadness of before really weighed on me and drained me so much. Of course, today I am not so energetic after this long day, but that is ok, because I am happy that Morgan is doing so much better!

Family Time

On Saturday we all went to the water park at Horseshoe Bay. For most families, this is just another family outing,but to us, this was a milestone. Just the fact that we even attempted to take Morgan with us is a thing to celebrate. Six months ago, we would have not even considered it, would have gotten someone to watch her at the house (or more commonly, I would have stayed home with her while Billy and Will went). So this was very, very special for all of us to go. And Morgan did great! We were there for over two hours. She swam a little, and then just hung out on the lounge chairs and ate a snack. She enjoyed it and did not get fussy! What a blessing! We also went with some dear friends of ours that have boys Will's age. We felt like a normal family, getting to spend time with family and friends!

Swimming at the water park at Horseshoe Bay

Another good report!

Today Morgan had and appointment with Dr. Stewart, her Neurosensory specialist that she has been seeing since she was two. This was his first time to see her since her surgery. He was so impressed! He did some sensory hearing tests on her which showed improved reflexes since the last time. He also helps her with diet and supplements to improve her immune system. He ordered some blood tests to check different blood levels to determine need for supplementing. We want her to have all that she needs but don't want to add in too many things at once because we have seen adverse reactions before. I also had him look in her right ear. She has been holding it lately, pressing on it, and acting like it bothers her. He said it looked fine, that the nerves are growing back on that side and it feels strange to her. We continue to be thankful to God every day. I told Dr. Stewart that we were so blessed, that so many people wer praying for her, and God is healing her. He agreed. He is such a great Christian man and gives God the Glory. He is always saying " it is The Good Lord that will heal her, I just help get her back to the way God created her to be". Thank The Lord for good Christian doctors that God has guided us to!

Playing her tambourine

Interacting and communicating in therapy

Today, The OT and ST were very impressed with Morgan! She is using PECS(picture exchange communication system), which is using pictures as your words to communicate what you want. She takes the picture of the activity she wants to do, and hands it to the therapist, then she gets to do that activity. She did not get as agitated today and was smiling and interacting with the therapists. We discussed starting her back on the listening therapy program, which is using specific musical tones to help with brain functioning. I had purchased the headphones and CD series a couple of years ago and used it with her. However, it didn't seem to help much back then. Now, that she is seizure free, her brain is healing, and she is learning, it should be a good time to start that with her. It is so exciting to see her progressing! What is also so awesome, is seeing the excitement in her therapists. They are so caring and want to see Morgan do well too! We thank God for leading us to such a wonderful team of therapists.

The story of Morgan's bed

Just wanted to share our adventure in trying to find a bed for Morgan. She had still been in the baby crib until this week. We have had a twin bed frame for some time and knew we wanted to transition to this. However, we also knew she needed some kind of protection to not only keep from falling out, but keep her from standing up on the bed, or getting up and roaming around. We had discovered a tent for her crib about a year ago. It was just in the nick of time too. It was during one of the times when she was reacting to one of her seizure meds and she was up all night, screaming. I would sleep on the floor(our concrete floors) next to her, so fearful she would stand up and fall out. Billy had researched and found the crib tent. We called all around and just happened (by the grace of God) to find two at a consignment store in Burnet that a lady had just dropped off the day before. It saved us many, many sleepless nights. So we thought surely there had to be something out there for a twin bed, right? Well, there were only two we could find. One was extremely expensive, the other very reasonable. So we decided to start with the reasonably priced one first. Well, everyone had the same idea and they were on backorder. They kept saying they were coming in, then something would happen. At one point, the ship was held up and couldn't get across to deliver them. Well after 8 months on backorder, we received her new tent to fit over a standard twin mattress. So excited finally! Got it out, took over an hour to put together, then our mattress wouldn't fit in it. We sent back the tent, thinking it was made too short. They sent us another one, still wouldn't fit. We called the mattress company to ask if maybe we had gotten a different size mattress. "It's a standard twin, they are pretty much all the same size". Well, apparently "pretty much" was enough of a difference. With a different standard twin(it was a little thinner) we were good to go. Morgan now has so much more room, it matches the colors of her room, and we can sleep at night knowing she is safe!

Communicating in therapy

Today, in speech therapy,Morgan used picture communication to let them know what she wanted to do. She did very well and they were very impressed with her!! My mom and dad took her there today and my dad was commenting on how alert and happy she is. Makes a difference when you don't have seizures anymore and you feel good!! So proud of our little girl. Now her fun thing to do is shake her tambourine and hear the music she makes. She is also climbing on her foam wedge and step and likes to stand up there. What strength she has now! Every night she goes for a run down our dirt road. She runs ahead of us but always stops to look back and make sure we are coming. She is also enjoying her big girl bed(story on that tomorrow). Way to go Morgan, we love you so much!

Morgan's New Bed!!

Good Report!!

Dr. Clark was very excited about Morgan's progress!! He was so amazed that he called Dr. Lee, the neurosurgeon who performed Morgan's surgery, to let him know. Dr. Lee was unable to see Morgan today because he is in Boston at a convention. Dr. Clark agreed to reduce her seizure medication, very slowly. We didn't even increase the stimulator because its not necessary to do so right now and hopefully never will be. We reviewed the genetic testing and it was all negative!! Praise the Lord!! The main thing we wanted to hear was that the brain disease diagnosis of MLC was negative. This was a horrible diagnosis given by a specialist in Houston. The test was highly specialized and took five months to get results. We had in the meantime had other testing done for congenital CMV. A specialist in the Netherlands had given us this diagnosis by studying her MRI in depth. We are at peace with this. This is a much better diagnosis. It is not genetic and not progressive at all, just something that happened. Now we can move forward to helping her as best we can and letting God heal her as He already is! Next appointment is in two months with both Dr. Lee and Dr. Clark. Thank you all again for all your prayers. God has answered!! We are so thankful!!

Doctor Appointment Tomorrow

Tomorrow is Morgan's appointment with Dr. Clark, the epileptologist. We are excited to discuss the possibility of reducing her seizure medication. I think Dr. Clark will really be amazed at how well she is doing. No seizures in almost two months!! He has not seen her since the end of March, at which that time she was still having some seizures. Also at this visit, we will discuss more thoroughly the genetic testing results. Thank you for our prayers.

Swinging!

Sleeping better

She has slept better the last couple of nights. This makes the whole family very happy! However, she has been pretty fussy off and on. She cried through her whole therapy session on Monday. She did better today, but still somewhat resistant. Don't know if its still her teeth bothering her, the effects of the new medicines, or that she is showing more emotion (more oppionated, wanting to do what she wants to do only). Anyway, she still did some good things in therapy today. She communicated by taking a picture of what she wanted to do, and handing it to the therapist! Way to go Morgan!! So thankful for every improvement we see!!

Insomnia

So now Morgan is waking up crying in the middle of the night, two nights in a row now. This is really not like her. Yes, she has gone through phases like this before, but for the most part, the last couple of years she has been a good sleeper. Despite, having had the seizures, but she would always go back to sleep. So I read the side effects of the antibiotic she is taking, sure enough: insomnia. Yes we are all tired, however like I was telling someone yesterday, this is nothing compared to what we have gone through before. I would take this any day over those awful seizures. Someone told me yesterday that they noticed how peaceful I was, that even through the lack of sleep and this new trial, it didn't seem to phase me. Giving God the glory fully!!

Feeling better

This has been another rough week for Morgan. She started vomiting on Wednesday, then got 103 fever on Thursday night. Thank The Lord that Tylenol kept the fever at bay through the night and we were able to get her a doctors appointment on Friday. She has another bacterial infection and was put on an antibiotic. Please pray for no reaction this time. I hate putting her on that stuff but I know she needs it to kill the infection. I guess her little immune system is still compromised since the surgery. Please pray for wellness for Morgan!! She is feeling better to day, no more fever and finally getting getting back her appetite. Those of you that know Morgan know she is definitely not feeling well if she doesn't want to eat. Anyway, it's times like these that I am really tested. Once again, our family had to split up for the weekend. We had planned to go to Billy's parents, but I stayed home with Morgan so Billy and Will could go. I am thankful that when she is well, we are able to travel to see our family, all together as a family. My prayer, though, is that one day we will all get to go do a vacation together as a family. My heart was broken last year when we went to Dallas to Legoland and six flags but she wasn't able to go. She just wouldn't have had fun. However, she is a different child now and God will bless us with that time together and restore that time that was lost! I am believing it!