A friend sent me this quote today:
"Do not pray for easy lives. Pray to be stronger...Do not pray for tasks equal to your powers. Pray for powers equal to your tasks. Then doing the work of your work shall be no miracle, you shall be the miracle".
-Phillips Brooks
Tuesday, April 30, 2013
Monday, April 29, 2013
Words by Tyler!
I decided I really need to write down the things that Tyler says about Leah. So the other day we were grocery shopping and he said:
Tyler: "Mom...look at that baby her legs move".
Me: "She is very cute. Our baby doesn't move her legs like her".
Tyler: "Our baby just survives".
Man...I love that kid and I don't know where he got the word survive from.
Tyler: "Mom...look at that baby her legs move".
Me: "She is very cute. Our baby doesn't move her legs like her".
Tyler: "Our baby just survives".
Man...I love that kid and I don't know where he got the word survive from.
Sunday, April 28, 2013
A little break!
We left Leah with our parents and we took a little break and went to Moab. Chad had a Dermatology conference so we tagged along. We had a great time. It was fun to spend some active time with our kids. We went hiking and swimming.
Two years ago we took our four wheeler down there and had a blast. We were really missing it this trip. We sold it to a great family who's daughter also has a metabolic condition. We hope their family is creating some great memories with old blue.
This was our first time leaving Leah. It was quite the chore getting everything ready for her to stay with grandparents. She had a ton of luggage and I wrote out three pages of instructions on how to care for Leah. It was very stressful leaving her but we really needed the break. While we were away I got a glimpse of my old life, a very stress free life. It was hard to come back to reality but she is worth it. Plus, I really missed her!
Leah got her stroller! We absolutely love it. Here's a cute picture of Lauryn's and Leah's beautiful nails.
Leah is doing well, no significant changes! Her legs aren't as stiff which is very nice for changing her diaper and holding her is easier because her legs will bend now. I had to take a picture of her legs so relaxed plus they finally have some fat on them. Yay!!!
She is a lot more alert, her eyes are moving around a lot more. We really like that. The one thing that is really sad is that Leah is throwing up almost every night, sometimes in the middle of the night which totally freaks us out. We have gone in to get her in the morning and she had thrown up sometime in the night. So scary because she aspirates so easy.
Her dosage of Dextromethorphan has sightly increased. We haven't seen any real changes in Leah since she has started the drug. Chad and I got our blood drawn and sent out to Chicago. Dr. Filloux said it will probably take two weeks to get the results.
I have struggled to blog for the past couple weeks. This new diagnoses has brought on some new emotions. When I am emotional I can't think therefore I can't blog. Life is hard and I know we are all battling something in life. I have found that it's so important to find balance in life. I feel so much better when I have gotten lots of rest and I eat right and exercise daily. I also wish from the very beginning of this sickness with Leah that I got some kind of counseling. I still haven't gotten counseling and I think it's so important because we don't know what to do with all our emotions and sometimes these emotions come out at the wrong times. One day I will make that happen but for now my counseling is a good laugh with friends, a date with my husband, a massage and a diet coke. I totally tried to give that up on that last one but it's just not happenin'.
Two years ago we took our four wheeler down there and had a blast. We were really missing it this trip. We sold it to a great family who's daughter also has a metabolic condition. We hope their family is creating some great memories with old blue.
This was our first time leaving Leah. It was quite the chore getting everything ready for her to stay with grandparents. She had a ton of luggage and I wrote out three pages of instructions on how to care for Leah. It was very stressful leaving her but we really needed the break. While we were away I got a glimpse of my old life, a very stress free life. It was hard to come back to reality but she is worth it. Plus, I really missed her!
Leah got her stroller! We absolutely love it. Here's a cute picture of Lauryn's and Leah's beautiful nails.
Leah is doing well, no significant changes! Her legs aren't as stiff which is very nice for changing her diaper and holding her is easier because her legs will bend now. I had to take a picture of her legs so relaxed plus they finally have some fat on them. Yay!!!
She is a lot more alert, her eyes are moving around a lot more. We really like that. The one thing that is really sad is that Leah is throwing up almost every night, sometimes in the middle of the night which totally freaks us out. We have gone in to get her in the morning and she had thrown up sometime in the night. So scary because she aspirates so easy.
Her dosage of Dextromethorphan has sightly increased. We haven't seen any real changes in Leah since she has started the drug. Chad and I got our blood drawn and sent out to Chicago. Dr. Filloux said it will probably take two weeks to get the results.
I have struggled to blog for the past couple weeks. This new diagnoses has brought on some new emotions. When I am emotional I can't think therefore I can't blog. Life is hard and I know we are all battling something in life. I have found that it's so important to find balance in life. I feel so much better when I have gotten lots of rest and I eat right and exercise daily. I also wish from the very beginning of this sickness with Leah that I got some kind of counseling. I still haven't gotten counseling and I think it's so important because we don't know what to do with all our emotions and sometimes these emotions come out at the wrong times. One day I will make that happen but for now my counseling is a good laugh with friends, a date with my husband, a massage and a diet coke. I totally tried to give that up on that last one but it's just not happenin'.
I try so hard to do this everyday!
Thursday, April 18, 2013
Monday, April 15, 2013
Friday, April 12, 2013
Finally an answer!
I never thought this day would come. We are not calling it a diagnosis but just saying we finally got an answer. Leah had new genetic testing done back in January which were sent to The University of Chicago. The test results show that she has an abnormality in her GRIN2A gene. Among other things, this gene controls the glutamate pathway. Glutamate is a key amino acid in the production of brain cells. Dr. Filloux explained that her body is unable to properly process glutamate.
With this discovery, Leah will now be an experimental case. She is experimental because she is one of only three reported cases similar to hers. And hers is the only one with these specific symptoms. I can't even wrap my brain around this information, my baby is one in billions. Unbelievable!!!!
So, Chad and I will be getting our blood drawn and sent to Chicago to see if we are carriers. The University of Chicago are covering all costs of these tests, it can cost 20,000 to run these tests. They are curious to see if we are carriers of this gene in hopes to learn more about it.
Dr. Filloux and Dr. Longo (Genetic/metabolic doctor) have come up with an experimental approach that they hope will help Leah with her glutamate pathway. We will be giving her a small dose of Dextromethorphan three times a day. This drug is commonly found in cough medicine of all places. It is a glutamate receptor blocker. What they are hoping is that this will allow her brain cells to better process glutamate. We are starting out at a low dose and slowly increasing. Since there are no other patients like this we don't know what the outcome will be but it feels good to at least have a plan.
Here we go! Cross our fingers!!! I can't believe this is happening!!!
With this discovery, Leah will now be an experimental case. She is experimental because she is one of only three reported cases similar to hers. And hers is the only one with these specific symptoms. I can't even wrap my brain around this information, my baby is one in billions. Unbelievable!!!!
So, Chad and I will be getting our blood drawn and sent to Chicago to see if we are carriers. The University of Chicago are covering all costs of these tests, it can cost 20,000 to run these tests. They are curious to see if we are carriers of this gene in hopes to learn more about it.
Dr. Filloux and Dr. Longo (Genetic/metabolic doctor) have come up with an experimental approach that they hope will help Leah with her glutamate pathway. We will be giving her a small dose of Dextromethorphan three times a day. This drug is commonly found in cough medicine of all places. It is a glutamate receptor blocker. What they are hoping is that this will allow her brain cells to better process glutamate. We are starting out at a low dose and slowly increasing. Since there are no other patients like this we don't know what the outcome will be but it feels good to at least have a plan.
Here we go! Cross our fingers!!! I can't believe this is happening!!!
All smiles/ An answer!
A couple days ago another window opened and Leah smiled and engaged for about half the day. It was a happy day at our house. Here's some pic's of it all:
She had just woke up that's why her hair is crazy and she is half dressed.
This incredible moment was given to us right before we received some news. Leah has finally been diagnosed. We are meeting with her doctor today so I am going to hold off on explaining everything until we have all the information. What she has is very rare. Dr. Filloux spent the day yesterday talking to doctors at a lab in Chicago and he also did a lot of research. I will post as soon as we receive more information.
Monday, April 8, 2013
Ty & Leah
Over the past few months Ty is realizing just how different Leah is compared to other nineteen month olds. He is always saying "I wish Leah could get better so we can play together". His prayers for her are so tender and precious! He tells me that when she is two years old, he will carry her everywhere on his back. The crazy thing is he really could because he is so huge. He says the sweetest things about Leah almost every single day. Yesterday he said "When Jesus comes will Leah not have her tube anymore". A little background on the whole "when Jesus comes". Chad tells the kids on a regular basis as he tucks them in at night he says "kids...let's hope Jesus comes tomorrow...goodnight". He's joking and serious at the same time (you have to know Chad).
I caught a moment of Ty holding Leah. He doesn't hold her that often so I made sure I recorded it.
I caught a moment of Ty holding Leah. He doesn't hold her that often so I made sure I recorded it.
Tuesday, April 2, 2013
Leah moved her legs.
Leah is having around two seizures a day. She has had some really great days these past couple weeks. She has had full eye contact and has been moving her arms and legs. At one point she tried holding her head up. This has made for a happy mama. Here is a video of Leah moving her legs.
Being off the diet has helped her gain some weight. She hasn't been weighed since the hospital and that was 16 pounds. But, she looks like she has gained some weight. Her tummy seems to handle the new formula okay. Whatever disease she might have really plays a role in giving her a bad stomach. She has reflex, gas and constipation...really BAD!
We still give Leah supplements from Dr. Humperies. She takes carnitine, folic acid, COQ10, vitamin D drops, fish oil and some herbs. Now that she is off the diet I am giving her barley water (this helps her tummy so much). We also want to start her vitamin B12 shots again soon.
We are now involved with Rainbow kids and Hope kids (support groups for chronically ill patients). They are wonderful and help us so much. When Leah is in the hospital they come and visit us daily and make sure Leah is getting all the medical care she needs. If we are not happy and need things done they get involved and make things happen fast. They have activities They have done some play therapy with my older kids. The therapist said they are very smart kids and they are coping extremely well. I was so happy to hear that. We work so hard to insure that each of our children are getting all they need.
Being off the diet has helped her gain some weight. She hasn't been weighed since the hospital and that was 16 pounds. But, she looks like she has gained some weight. Her tummy seems to handle the new formula okay. Whatever disease she might have really plays a role in giving her a bad stomach. She has reflex, gas and constipation...really BAD!
We still give Leah supplements from Dr. Humperies. She takes carnitine, folic acid, COQ10, vitamin D drops, fish oil and some herbs. Now that she is off the diet I am giving her barley water (this helps her tummy so much). We also want to start her vitamin B12 shots again soon.
We are now involved with Rainbow kids and Hope kids (support groups for chronically ill patients). They are wonderful and help us so much. When Leah is in the hospital they come and visit us daily and make sure Leah is getting all the medical care she needs. If we are not happy and need things done they get involved and make things happen fast. They have activities They have done some play therapy with my older kids. The therapist said they are very smart kids and they are coping extremely well. I was so happy to hear that. We work so hard to insure that each of our children are getting all they need.
Monday, April 1, 2013
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