Ruby has been giggly and content all week, but unfortunately she had seven seizures! We have no idea why she had so many after the pneumonia was gone. We increased a med last night and thankfully today was a great day. I am hoping that stops the seizures.
We have been out with friends and family all weekend and the kids have done so well. They are playing hard in the sun and then crashing at night. Ruby is tired after her seizures, but other than that she has been so happy. Her lack of mobility makes outdoor activities a little tough. The wheelchair does not do well in the sand at the beach or bark in the parks and this can be frustrating.
Even so, I am thankful for her smile and the beautiful weather. Tonight I am feeling peaceful and blessed.
Hope you all have a blessed Memorial Day!
Sunday, May 25, 2014
Wednesday, May 14, 2014
ABR Trip Recap
We are still recovering from our crazy ABR trip last week. Here's the story…
Unfortunately, Ruby threw up in the car on the way to Pennsylvania. That night (Wed night) she spiked a high fever. Mark made a Walmart run in the middle of the night to get her some motrin and a thermometer. We were up most of the night with her as she was pretty miserable.
Thankfully, in the morning she didn't have a fever and she seemed tired, but okay, so we stuck it out for our training session that day. We made it through two sessions and an evaluation, but, by the end of the day Ruby was so exhausted and the fever came back. We put her to bed early and she slept hard for a few hours. Right when Mark and I were ready to go to bed Ruby started fussing. Her fever was high and she was so uncomfortable. She stayed awake whimpering from 11pm-4am. Mark and I tried to decide what we should do. We knew she needed to see a doctor, but we were 12 hours away from home. Should we take her to the ER in Pennsylvania? Should we get in the car and drive home through the night? Should we wait it out and try to get her last training session in?
Finally she crashed and so we decided to as well. We slept from 4:30-6:30am and then got up and got ready to drive home. We met with Ruby's trainer for about 30 minutes before our scheduled session. He quickly explained the last of the exercises we needed and he gave us the rest of our therapy tools. Then we skipped the session and drove to Michigan.
We drove for a long 12 hours and went right to DeVos Children's Hospital in Grand Rapids. Ruby was a mess by the time we got to the ER. She threw up on the way to our room and cried hard for awhile. Her fever was 103.5 by this point. They did a chest x-ray and found pneumonia, which is what we had expected. She probably aspirated Wednesday morning, which caused the pneumonia.
Thankfully, her stats were fairly good so they gave her meds to control the fever and vomiting and then sent us home on oral antibiotics. Ruby felt miserable for the two days, but by Sunday night we started to see a few smiles again. She has been home from school all week. She is doing fairly well at home, but still so tired and coughing a lot.
To top this off, Tabatha had fever off and on from Saturday-Tuesday. Needless to say, it has been a LONG week and we are all tired.
We are glad we got what we needed from the ABR training. We are convinced this is the best therapy for her as her body continues normalize and show positive changes. It was disappointing that the trip was so exhausting and stressful, but we are thankful the therapy is helping Ruby. This makes all the stress worth it.
Unfortunately, Ruby threw up in the car on the way to Pennsylvania. That night (Wed night) she spiked a high fever. Mark made a Walmart run in the middle of the night to get her some motrin and a thermometer. We were up most of the night with her as she was pretty miserable.
Thankfully, in the morning she didn't have a fever and she seemed tired, but okay, so we stuck it out for our training session that day. We made it through two sessions and an evaluation, but, by the end of the day Ruby was so exhausted and the fever came back. We put her to bed early and she slept hard for a few hours. Right when Mark and I were ready to go to bed Ruby started fussing. Her fever was high and she was so uncomfortable. She stayed awake whimpering from 11pm-4am. Mark and I tried to decide what we should do. We knew she needed to see a doctor, but we were 12 hours away from home. Should we take her to the ER in Pennsylvania? Should we get in the car and drive home through the night? Should we wait it out and try to get her last training session in?
Finally she crashed and so we decided to as well. We slept from 4:30-6:30am and then got up and got ready to drive home. We met with Ruby's trainer for about 30 minutes before our scheduled session. He quickly explained the last of the exercises we needed and he gave us the rest of our therapy tools. Then we skipped the session and drove to Michigan.
We drove for a long 12 hours and went right to DeVos Children's Hospital in Grand Rapids. Ruby was a mess by the time we got to the ER. She threw up on the way to our room and cried hard for awhile. Her fever was 103.5 by this point. They did a chest x-ray and found pneumonia, which is what we had expected. She probably aspirated Wednesday morning, which caused the pneumonia.
Thankfully, her stats were fairly good so they gave her meds to control the fever and vomiting and then sent us home on oral antibiotics. Ruby felt miserable for the two days, but by Sunday night we started to see a few smiles again. She has been home from school all week. She is doing fairly well at home, but still so tired and coughing a lot.
To top this off, Tabatha had fever off and on from Saturday-Tuesday. Needless to say, it has been a LONG week and we are all tired.
We are glad we got what we needed from the ABR training. We are convinced this is the best therapy for her as her body continues normalize and show positive changes. It was disappointing that the trip was so exhausting and stressful, but we are thankful the therapy is helping Ruby. This makes all the stress worth it.
Tuesday, May 6, 2014
ABR Here We Come
Mark, Ruby and I are heading to Pennsylvania tomorrow for some more ABR therapy training. It will be a quick trip; we will drive most of the day tomorrow, have training sessions all day Thursday and Friday morning and then we will head for home. My parents are graciously taking Tabatha and Charlie for three days. They are THRILLED to be going to Grandpa and Grandma's house for a sleepover :)
While I wish our time away could be spent differently, I am looking forward to traveling with Mark and Ruby. Thankfully Ruby is usually a great traveler and it is always nice to connect with Mark in the car and eat out with him for a few days.
We anticipate learning new exercises and seeing how Ruby's body has changed since we were in Montreal six months ago. Please pray we are encouraged about the progress we see and feel energized for many more months of therapy for our little sweetheart.
While I wish our time away could be spent differently, I am looking forward to traveling with Mark and Ruby. Thankfully Ruby is usually a great traveler and it is always nice to connect with Mark in the car and eat out with him for a few days.
We anticipate learning new exercises and seeing how Ruby's body has changed since we were in Montreal six months ago. Please pray we are encouraged about the progress we see and feel energized for many more months of therapy for our little sweetheart.
Sunday, April 20, 2014
This World is Not Our Home
Hallelujah! He has won the victory!
Hallelujah! He has done it all for me!
During an amazing Easter worship service, I was reminded that this world is not our home.
Because of Jesus' sacrifice we have HOPE and JOY for the future. What an incredible truth!
I hope you were able to experience the Easter story today.
Monday, April 14, 2014
Heavy Heart
Can my sweet girl just have a break.
I had tears last night as I watched Ruby seize. She had been up for hours, then she threw up and we found her in bed covered in it. Then, we got her cleaned up and she was finally settling down when she started seizing. This was a seizure where she cramped up and then cried through it like she was scared or maybe in pain. There I sat by her side, helpless. All I could do was hold her and tell her how sorry I was that she had to go through this.
We have been experimenting with the feeding pump all weekend. Last night we gave her her evening feed and her morning feed slowly through the night. I thought this would help her tolerate it but apparently that wasn't the case. We will keep experimenting; I often wish she came with a manual.
My heart is heavy this morning. Our reality with Ruby hits hard sometimes.
"Hear my cry for help, my King and my God, for to you I pray. In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly." Ps. 5 :2-3
I had tears last night as I watched Ruby seize. She had been up for hours, then she threw up and we found her in bed covered in it. Then, we got her cleaned up and she was finally settling down when she started seizing. This was a seizure where she cramped up and then cried through it like she was scared or maybe in pain. There I sat by her side, helpless. All I could do was hold her and tell her how sorry I was that she had to go through this.
We have been experimenting with the feeding pump all weekend. Last night we gave her her evening feed and her morning feed slowly through the night. I thought this would help her tolerate it but apparently that wasn't the case. We will keep experimenting; I often wish she came with a manual.
My heart is heavy this morning. Our reality with Ruby hits hard sometimes.
"Hear my cry for help, my King and my God, for to you I pray. In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly." Ps. 5 :2-3
Wednesday, April 2, 2014
Feeding Pump
For the past couple of months, Ruby has had a hard time tolerating her morning feeding. We have had to feed her very slowly and we always keep a towel close by, just in case it comes back up. Unfortunately, she has thrown up several times, even twice on the bus ride to school.
I am not sure why this has changed. She used to be able to tolerate all of her feedings just fine, in fact, I was always thankful that we hadn't had any feeding tube issues. Now, watching her be uncomfortable when she eats in the morning makes me sad and helpless. I also worry more about her aspirating when she throws up.
Today, because of the advice of a good friend, I decided to call one of Ruby's doctors to ask if we could order a feeding pump. A pump will regulate how quickly Ruby gets the formula so we can slow down her feedings. Now, we need to hold her tube for the entire feeding; in the morning this can occupy one of us for 45 minutes. With a baby on the way, this is going to be tough for our family. With the pump, we could set her up to eat, push a button on the pump and then have our hands free while she eats.
The doctor called back today to tell me she ordered a pump for us. Airway Oxygen (our medical supply company) will call us soon to set up a time when they can drop off the pump and teach us how to use it. I am not looking forward to having more medical equipment in my house. In some ways, this seems like a set back. On the other hand, this should help Ruby feel better in the mornings and we won't have to worry about her throwing up on the bus. The pump will also give us more time to help the other kids in the morning. Maybe it will make mornings less stressful.
I used to fight for Ruby to make gains and meet developmental milestones. Now, I fight for her to be happy, healthy and content. This may seems like I have thrown in the towel, but that is not the case. I think God has just taught me to be content with where she is at. Most days I accept what is and find joy and peace in daily living.
If the feeding pump improves Ruby's quality of life and helps us keep the stress down at home, then bring on the feeding pump!
Sunday, March 30, 2014
Time Away
All moms need time away from their kids. This is especially true for special needs moms. Therapy, meds, doctor's appointments, feeding tubes, drool, sleepless nights…these things are exhausting and can make me feel tired and alone.
Sometimes, I am able to get away for a night with my husband. This is great and necessary, but can be tough to schedule because we have to find someone to watch our babies. This past weekend, Mark stayed home with the kids, and I was able to sneak away with two other moms of special needs kids. What a blessing!
For 28 hours or so, I didn't have to feed anyone, change diapers, crush pills, clean up puke, play rescue, or watch Cailou. Instead, I was able to laugh, listen, vent, eat good food, get a massage, sleep through the night (this was incredible by the way :) and connect with women who truly understand where I am coming from because they are dealing with similar things at home.
I LOVE being a mom, but once in awhile, stepping away from this role is so healthy.
I thank God for putting these women in my life!
Sometimes, I am able to get away for a night with my husband. This is great and necessary, but can be tough to schedule because we have to find someone to watch our babies. This past weekend, Mark stayed home with the kids, and I was able to sneak away with two other moms of special needs kids. What a blessing!
For 28 hours or so, I didn't have to feed anyone, change diapers, crush pills, clean up puke, play rescue, or watch Cailou. Instead, I was able to laugh, listen, vent, eat good food, get a massage, sleep through the night (this was incredible by the way :) and connect with women who truly understand where I am coming from because they are dealing with similar things at home.
I LOVE being a mom, but once in awhile, stepping away from this role is so healthy.
I thank God for putting these women in my life!
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