Gm-123.org

Check out our new website http://www.gm-123.org/

dedicated to GM1 Gangliosidosis, as well as Gm2 Gangliosidosis or Tay Sachs and Sandhoff. Brad's been designing the website and I've been collecting stories, info and news for it for the past few months.

Here is a direct link to some stories of children who have these disorders.
http://www.gm-123.org/stories

Eli's G-tube Surgery

During the last few months, Eli's swallowing abilities got increasingly worse. He was rejecting foods, many foods that he used to love. Crying, whining and getting frustrated during meals. Not always, but often. He was coughing more and having a difficult time. It was also very frustrating for me, since I never knew what he would eat, or IF he would eat. Friends on the Gangliosodisis facebook group recommended I get him into a swallow study ASAP.

The swallow study showed that he was aspirating silently, (no coughing, small amounts going straight into the lungs). He aspirated while drinking thickened liquid, so we didn't even try the thinner liquid. He didn't aspirate the applesauce, but did get some into his nasal cavities. As well as the soft breakfast bar we tried. Later that day, he was coughing while eating some food, so I was sure he was aspirating then. Aspirating isn't good and could lead to pneumonia. Getting food and things into the nasal cavities is probably not good either. I'm sure that could lead to an infection. It also explains why he always sounds congested, like a little piggy. Especially at night.

The doctor called later that day and recommended a feeding tube. She said it is paramount that we prevent pneumonia and both Brad and I agreed. We got in to see a surgeon very quickly and scheduled the surgery. The first week after the surgery was very difficult and different. Harder than I expected it to be, but now he is doing well. He is eating small amounts of things by mouth, but definitely no liquids by mouth. About 3/4 of his nutrition is coming from the feeding tube now. I feel much better knowing that he is getting everything he needs.

Right after surgery. 

 I took off his dumb helmet, he wasn't going anywhere. 

 When he slept, it was actually really cute, he kept making sucking motions with his lips. 

 We were in the hospital for 4 days, so we found some Baby Einstein videos that helped pass the time. 

They were able to put a small button in right away, instead of a long temporary tube, so it isn't very obtrusive.  (the white thing is the G-tube button, they also made an incision in the belly button). 

After a few days he felt well enough to go for a walk around the hospital in his wheelchair. 

He is doing much better now. 

smiling!!!

So much to write about, so little time...

Eli with his respite and habilitation provider, Nicolle! Watching the boys during The Centerstage Performance. 

Fun activity at Tu Nidito (letting no child grieve alone) for siblings. http://www.sproutonline.com/videos/emma-kind-kid Emma Lock and her family were there and gave each sibling a lock box. She got this cute stuffed animal. She also had her face painted and harassed "Hook" (a man dressed up as hook at the party) since she was the crocodile!

Pictures from Eli's birthday

I wear hats a lot lately! bad hair days...

Nicolle brought a cake and balloons for Eli! She's so thoughtful!

enjoying that cake!

The balloons fit on the bus!

Daddy/daughter dance!

kids will be kids

Brad did awesome in the Phoenix half marathon. 

Crazy us, working on the new floors. 

Tucson Creatures. 

Journal Entries from January until Now:

1/28/15 

Today was a pretty good day. A lady from my Church has been coming by after school 3 days a week to help out with Laya's homework. Laya loves her and it has been such a lifesaver. 

2/1/15 Eli fell off of the couch today. he fell backwards off of the side. I was sitting right next to him when it happened but it happened too quickly. He was wearing his helmet but he still hit his head hard on the tile. He cried for a while and it was hard to see. 

3/15 - 


    Before there was a wall on the right, the fridge and pantry were on that wall and there was a peninsula...no island. There was door opening as well that is now gone. 

No more wall, fridge is moved, Finished the kitchen floors last night!  

The kitchen is almost done, I also finished painting the walls today in the living room. 

We still need to paint the door to the garage and the pantry door. 

3/16 Connected with Eli today, just taking care of him and playing with him during Evan's nap.  

Evan learned how to sign cracker and does it so cute. He also still remembers how to sign cereal and touches his mouth whenever he wants his pacifier.  

3 / 2 - I missed two appointments today because my brain wasn't with it. We made up for Laya's dentist appointment this afternoon. She had a frenectomy done, basically the gum string in between her two front teeth was lasered off.  She did a great job being a brave girl, she is growing up. 

3-26 

DDD came this morning to set up services for Evan, respite care, transition to kindergarten, the children's clinic, and figuring out some sort of communication device. I have plenty to do on my part to get these things going as well. 

3/29 

We went for a walk and Evan walked around the whole neighborhood!. He had such a great time, he listened pretty well too and stayed on the sidewalk. 

Accompanied on the piano for an Easter program today in Church. There were many spiritual moments. 

3/30 

We have begun eating outside in the backyard now because Evans throws his food at almost every meal Mommy is getting tired of it. It's just easier to eat outside. We have a fan set up to help with the heat. It's actually pretty fun. 

3/31 

Today is Eli's birthday, he had a great day. I made the boys eggs and waffles for breakfast, Eli was a little fussy, but ate it ok. Nicolle, Eli's Habilitation showed up with some balloons and a cupcake for Eli. We had a great time playing this morning. I played with Eli alone in his room for a little while. We had fun building blocks and knocking towers down. I helped Eli hand over hand, doing that keeps him feeling good and accomplished. Then I went out on the trampoline and jumped with him, he laughed so hard when I held him and jumped up and down then. I gave Evan a turn and he laughed even harder. Nicolle and I took pictures of Eli and videotaped as we sing to him with his cupcake. He was a little bit fussy about eating lunch and seemed pretty tired when we sent him off to school. Luckily his wheelchair with all the balloons attached to it fit on the bus. 

When he got home from school, Brad met us at the public pool and we all went swimming.  Laya had fun swimming around and doing all her tricks. Evan had a great time walking around and jumping off the side into Daddy's arms and Eli had fun kicking his legs in the water. It wasn't too sunny and we started getting cold pretty quickly. Once Eli's lips began turning blue we decided to get out, even though we hadn't been their long. Evan was also shaking and even after getting him dressed he was still shaking, but we got in our warm car and everything was okay. We drove to Texas Roadhouse for dinner and had a great time. Eli loved the mac and cheese. Grandma Leishman had to send a cute package that we had fun opening. Eli got to sit on the saddle and be cheered by the service staff. Evan went a little crazy towards the end and Brad had to take him out to the parking lot. Eli was so tired as we drove home he was falling asleep in his car, I tried to keep him awake so that I could put him to bed when we got home. I helped him drink his Pediasure before bed. 

                                     

4/4 sat. 

we had a fun day to day going on a scavenger hunt that the "Easter Bunny" had planned. 

4/5 sun. 

Today was Easter, We had cinnamon rolls and fruit salad for breakfast. We watched morning conference, then had bacon eggs and waffles for lunch. Eli wouldn't eat much of it, he's been struggling more with eating. After that we had a spiritual moment when we discussed the last week of Jesus's life and Brad read a story about a little girl who lost her baby brother and had a testimony of seeing him again when he was resurrected. We then watched the afternoon session of conference and then went for a walk. Evan walked all the way home from the park. He had a blast. We had fun swinging on the swings together and Evan climbed all the way up this climber thing and then would slip through the bars and drop down onto the sand. Later, I got stressed out for some reason and had to drive around the neighborhood for a few minutes to calm down. Brad was really understanding. 

4/6 Mon. There was a bomb threat today at our elementary school. A hand-written note was found just around the time when Eli was getting on the bus to go. The kids were evacuated and brought over to a nearby middle school. It turned out to be a threat/prank, not an actual bomb, but it was still scary for us parents. Laya thought it was a really fun, because she got to go watch a movie in the gym. Tonight I prayed and was so grateful that everyone was okay today. 

Laya had gymnastics today and they assessed her level. She only has 4 more things out of probably 40 that she needs to improve on before she moves to the next level, it's fun to watch her improve. 

April 7th Tuesday, 

Evan is screaming. Evan is crazy right now, he is climbing on top of the double stroller, just a minute ago he was trying to climb on Laya's chair, hugging her and screaming at the top of his lungs. The minute before that he was eating dog food, right before that, he was grabbing the doggie water and drinking it, then dumping it all over the ground. Then he climbed up onto the table and fell off right off of it. That's when I really screamed because I was so scared. Luckily he landed well and didn't hit his head.  I can't keep up with him sometimes. I was literally stopping the thing he was doing while he was moving on to the next thing. When he get's that way, I just have to give him my complete attention or put him in his bedroom for a few minutes if I can't give him complete attention. 

4/16 Thur.

It was a busy day today, Eli had appointments in the morning and then he got to school late. I haven't had respite care in a while and I tried to do some things but I had a hard time concentrating. I ended up going to the store instead because I couldn't concentrate at my house. Too many things were weighing on my mind about Eli and stuff. Then after school the hospice nurse and social worker came for a visit. Eli refused most of his food today. We had our dress rehearsal for centerstage singers tonight. We will not have any more rehearsals at our house for a long time, which gives me some relief. Our performance is on Saturday and I think it's going to be a good one!

4/19 Sunday

We had such a great time at the fair yesterday. The Centerstage singers performed so well. The kids were very cute on stage. It's so fun watching them come out of their shells and do such a good job. Laya was a bit of a disaster that morning for some reason, she was overly tired and in a bad mood. But she got over it and we had fun at the fair. 

Today I cut Evan and Brad's hair. Evan looks so cute, but Brad's didn't turn out that great. I need to use scissors on top instead of the raiser next time!

Yesterday Eli was coughing at dinner, I fed him rice, (because he wouldn’t eat any waffles) and some egg and cheese. I was wondering if was aspirating the food since he was coughing quite a bit. I thickened his drinks with applesauce and he seemed to tolerate it better. We’ll just have to make sure his drinks are extra thick. He was crying and whining a lot at dinner, I think it was hard for him, but he kept wanting more it seemed.  

Tonight at around 9pm, Eli woke up crying and really upset in his room. He was sitting there, coughing and crying. He had some drool coming out of his mouth, I think he was choking on his spit up or something, but I didn’t see anything on the bed. He calmed down after I patted his back and cuddled with him for a while. I have an appointment set up for our G-tube consultation. We will see if it is possible to get it done soon.

Evan had a fun day with Suehelen, his respite provider. She is so good with him. He got a lot of one on one attention. His eyes still have red in them, patchy and in the corners. Suehelen said he held his attention for about 7 minutes at a time doing one activity, they were playing cars. That is really good for him! Evan has qualified for CRS, Children’s rehabilitation services. So when I bring Eli tomorrow to his appointment, I’m going to make sure everything is set for Evan to get going. We really need to get an eval for a speech device. I think Evan can do one, simplified, if we teach him right now, before his thinking starts to slow down. We’ll see.

Evan had eye surgery on both eyes last week. Everything seemed to go well, but it took him a week to feel back to normal. 

Before the Surgery

After the Surgery

I was up at 4:30 in the morning because of a nightmare. I was so scared that I had a hard time going back to sleep. I even made Brad get up and go check on the kids since I couldn’t move. Eli kept banging his head against the wall (on accident, as he rolled around the bed) which made it worse. I sang hymns in my head for about 30 minutes and still kept thinking about it, then I began to pray and then my thoughts changed from thoughts of fear, to thoughts of fighting against evil. I became a warrior, then I finally felt better and fell back to sleep 30 minutes before I needed to wake up.

4/26 Sunday

Yesterday we had a really fun day as a family. Well the fun part was in the evening. Yesterday morning I spent about 5 hours in the garage painting the baseboard wood so Brad can put it up. Brad put up the baseboards in the kitchen area. And then later we went as a family to "get air". Evan was in heaven. He climbed and bounced all over the place. It was a great place for Eli since it was so safe and bouncy. Brad and I jumped along with the kids, the only not fun part was when Brad smacked me in the face with the dodgeball. Then we stopped and got some Slurpees at 7-Eleven. It was a fun night. 

5/2/15 Saturday

Yesterday we went to Phoenix for Annalise and Cassidy's wedding. It was a beautiful experience in the Gilbert temple. Mom, Nichole and baby Striker came down from Utah. We then met everyone at the restaurant and Evan began to be really naughty because he was so tired! Some of the family helped us out with him. Nicolle drove home with me and we had a fun time talking. 

5/3/15 Sunday

Today we got ready for church and Nicolle fixed Laya's bangs because she had cut them again!

During fast and testimony meeting at church, as others were going up to the stand and sharing their testimonies, I felt like I should bring Eli up to the stand and bare my testimony. I shared that if Eli could speak, I'm sure he would tell us that he loves Jesus and is grateful for his sacrifice for him and all of God's children.  I also mentioned how grateful I am for our ward, the church and Jesus and his atonement and resurrection. I know it was the spirit that prompted me because I was not thinking of doing anything of the sort and the idea simply popped into my head. I hesitated at first, wondering what people might think, bringing a boy in a wheelchair up to the stand. But I quickly gained the courage to make that walk to the front and knew that it was the right thing to do. Eli is the most Christlike individual I know and a few individuals came up to me afterwards and told me how touched they are by Eli and his amazing spirit. 

After church we ate dinner and then went on a nice walk to the park. We got home just in time before it began to rain.

Looking handsome in a new outfit Nana got him!