On Friday April 5th Dave’s Grandmother Carmella Byerly passed away. It was sudden in how fast her body quit on her, but not sudden in that we knew she had been declining for several months now. For the past 6 months or so his Grandma had been in and out of the hospital for various problems and had problems maintaining a body weight. She had been down to 76 lbs at one point. Abby weighs almost as much as she did. On Wednesday April 3rd she went to the hospital due to a bloody nose she could not get stopped. They got it stopped and were going to send her home, but she insisted she didn’t feel right. By the end of that day she was in ICU and her body seemed to be shutting down. My father-in-law then received a call at 4 am Friday morning saying he should come be with her and later that morning she passed.
It is really too bad we can’t save the mind when the body stops working. Her mind was sharp as a tack and she was herself all the way to the end. I remember when my Grandmother was in her final months she was not all there. I can remember sitting with her and all she would do was moan and sing for God to take her home. Her body didn’t want to give up even though her mind was not with us any longer.
She moved back to this area several years ago so we have been able to spend birthdays and holidays with her. It was so wonderful that my children and I were given the opportunity to get to know her. She was an amazing person. She had so much love to give.
I’m not sure how much Zach really understands what is going on, but Abby has been very curious about death. This was the first person she has really known that has died. She has been asking many questions about death; where our body goes and where are spirit goes. She is comforted by knowing that Great Grandma is with God. She has said that she believes in God and will get to be in heaven with her too. She was also very curious about the viewing and seeing Great Grandma’s body. She did not seem afraid by it at all and I think it was good for her to see and have closure. Zach said that she looked like Sleeping Beauty.
Here are some pictures of her from the past several years of the many family times we had with her. Love you and miss you.
It has been quite a week leading up to Easter. Dave was on call this week and had lots to do at night. Matt starting teething so the wonderful sleeping through the night he had been doing for almost 2 weeks was over. Despite being tired we have had lots of fun as a family getting ready for Easter.
On Tuesday Zach and I got out the Easter decorations and put them out. Zach was very interested in playing with his basket, but didn’t understand the mess the Easter grass would make. Ugh! Had to follow him around for a bit picking it all up so the cats wouldn’t eat it and get sick. Finally found his Easter bucket he was given several years ago and filled it with the plastic eggs so he would stop playing with his basket. Not looking forward to the mess Easter morning will bring. The Easter Bunny will have to make sure to hide the baskets where the cats can’t get into them.
Abby had off of school Thursday and Friday and Dave did so much over night work on Wednesday that he worked from home for a half a day Thursday and had off on Friday. It has been very nice having everyone home so much. Wish it could be like this more often. Abby and Zach have really been enjoying playing with each other, especially outside. Yes that is right I said outside! It has been sunny and warm enough in the high 40s low 50s to spend considerable time out side. Yay vitamin D!
On Thursday the kids and I made sugar cookies in the shapes of eggs and bunnies. The cookies are so good we have to make a second batch. Dave and I are eating all the cookies before the kids can.
Abby wanted me to post, “We love sugar cookies!”
On Friday we had lots of fun dying eggs and having our Easter egg hunt. Not sure how many of you still do this, but we use the real eggs that we dye in our Easter egg hunt instead of the plastic eggs. Some of my fondest memories as a kid was dying eggs at my Grandma Swaim’s house and then hunting for them in her backyard. My mom would always have my sister and I go into my Grandma’s family room and wait for her to hide the eggs outside. We were very good and never peeked. Not sure I would trust my kids not to peek. They are just so curious about everything we do at this age. We put on a short video for them to keep them occupied while I hid the eggs in the backyard.
Abby was very sad that she cracked her egg.
The finished product. We only cracked 2 eggs in the process of dying, which the kids ate as soon as they were done.
Sitting on the couch watching an episode of Sofia the First while Mommy hid the eggs.
The Hunt:
I had to keep giving Zach hints about where the eggs were and encouraging Abby to let him find some. She is so fast and sharp that she probably could have found all the eggs before Zach really had a chance to find many.
Here is a nice spring time/Easter/belated St. Patrick’s Day craft that is easy and fairly mess free, coffee filter rainbows. If Zach was able to do this mess free your kid can too.
Take a white coffee filter and cut it in half. Then take food dye and combine it with some water in cups. You don’t need too much water, just enough that it will run on the coffee filter and let the colors mix. Lastly, you will need a medicine dropper.
I put the coffee filters on a shallow pan so that the dye wouldn’t run all over the place. It seemed to work great. Then just take the medicine dropper and fill it with the color of your choice and put drops on the filter. Here is how it turns out.
It has been so amazing to watch and see how much Matt has changed since the summer and especially in the last 2 months. Matt is now 17 months, but still small for his age. I think the last time he was at the doctor he was a little over 17 lbs and 27 1/2 inches long. He finally moved up to 12 month clothes. We are definitely making good use of Zach’s hand me downs with Matt.
On the medical front Matt is seeing his specialists less often. Most of them say they don’t have to see him for another year or two. YAY!
He saw his cardiologist in September who stated he still has a VSD (small hole in the heart), but it is so small there is no concern and it will not need to be surgically corrected. They still can’t figure out if he has a bicuspid aortic valve or not. The cardiologist seems very confused by it. She stated either he has it and it works just fine or some how we keep missing seeing the 3rd flap in the EKG. Anyways, again nothing to do but monitor. So he will go back again to her next September.
Matt also saw his neurologist who is very encouraged by his interactions with her and the reports from Early Intervention. She still wants to monitor him, but she is not concerned about autism or him developing seizures. She stated the way he played and interacted with her would not have been possible for a child with autism. She wants to see him in a year or two.
He is due to see his neurosurgeon for his 1 year follow up to the tether cord release in April and I have to make appointments for him to see his endocrinologist, nephrologist, optometrist, and possibly speech/feeding. I plan to speak to his pediatrician at his 18 month appt in April regarding the speech/feeding side of things. He had a swallow study in the fall that showed he was no longer aspirating thin liquids, which was great. We were able to get him off of the thickened formula. What it did show was very confusing though, especially since they had never seen it before in his previous swallow studies. They found that thin baby food was going up into his nasal passage. They asked us to follow up with ENT and have them check his pressures. I was not happy with the appointment nor the result. I’m not sure the ENT did what speech/feeding wanted him to check. They wanted his pressures checked (still not sure what that means), but the only thing ENT did was upset by putting a scope down his nose to make sure everything was still open. Matt go very upset and spit while they were putting the scope down his nose. The ENT asked if this was normal, my initial thought (which I did not say) was yeah normal for a kid that just got held down and a scope put down his nose and into his throat. I told him no he didn’t often spit up and definitely not like that. The ENT then decided Matt had reflux and wanted him back on reflux meds and to get another swallow test in 2 months. After talking with Dave about it we are ignoring what ENT said and not giving him reflux meds. I’m still not sure what reflux has to do with the food going into Matt’s nose when he tries to swallow instead of down his throat.
Matt had his Early Intervention 1 year review in January. He is doing really great with his physical therapy and we are much happier with his new develop-mentalist. She has a background in speech and feeding so she has been working with him on those issues as well as other developmental milestones. It seems like so many things have happened in the past couple months regarding his motor skills. For the longest time we were working on rolling over and sitting up and now it seems like everything is at warp speed.
He went from just starting to crawl in January to pulling himself up to stand, to cruising along things to walking with a walking toy in just 2 months. Today he took 11 steps on his own with the walking toy. He will be getting orthopedic braces for his legs (appt April 3) to help with positioning and ankle strength. He was using some generic ones for a couple weeks to see if they helped and they seemed to have giving him the push in the right direction. Since he did so well with them his PT wants him to get ones made just for him with a movable ankle so he can crawl and walk with correct foot positioning. He tends to try and point his feet out like a ballerina in 1st position.
Some other fun stuff about Matt:
Even though Matt doesn’t eat non-baby food yet he loves to watch us eat and tries to steal snacks if they are in his reach. We have found he likes the small round crackers we get from Trader Joes. He takes bites of them and just lets the cracker dissolve in his mouth. Not sure how much he has actually swallowed or if it just all comes out with his drool onto his bib. I’m just happy he is starting to try.
Matt loves music. All of our kids have seemed to enjoy music, but Matt most of all. He favorite songs are anything to the tune of “Twinkle, Twinkle Little Star” and “Row, Row, Row Your Boat”. He especially loves when I sing and looks around at everyone else with an expression of okay now your turn to start signing. He smiles and laughs when I sing “Twinkle, Twinkle Little Star”. I definitely have to try and get a video of that. He also has a toy he got from our friends Earl and Candra in February that plays music and has all different instruments with it. I would say that is one of his favorite toys. Lastly, he loves to play the toy piano. Unlike our other kids he tries to play each note with just a finger. He doesn’t just pound on the notes. Dave also said it looked like he was dancing the other night to the tune he was playing. I can’t wait to see what kind of musical talent this kid will have.
Other favorite toys are the ABC foam blocks (especially the blue ones), rings, cups, and books.
Lastly, and to me the most important, Matt has finally started to sleep through the night most nights. He typically goes to sleep between 9:30 and 10:30 at night and stays asleep until a little after 8 am. Some nights he still gets up, but it is more like 4:30 in the morning instead of 2. I have been getting more than 3 hours of sleep a night. I feel like a new person. I just hope it continues.
Here are just some others of Matt that are too cute to not post:
Posted by Rachel
