The Seizures: As of today, the seizures have (for lack of a better descriptive word) gone down, to the point that we don’t think she has had any the past few days. My guess is that they will simply come in waves. Several for several days… and then we won’t see any for several days. We know that the medicine that they have her on now will likely not stop or control every seizure, just a majority of them. The docs are still looking into all the anti-seizure medicine options.
GI situation: Yesterday they performed another abdominal X-Ray and they can’t see any evidence of an obstruction. I guess this is “neutral” news for the very simple fact that she doesn’t have an obstruction. But it does not offer any clues as to what the underlying cause of the GI complications.
EKM is still having problems with her distended stomach so they have stopped her feeds. Her stomach went down but as of yesterday it became distended again, after a few days without milk. So this is yet another troubling turn of events.
There are only speculations as to why her stomach is starting to behave like her intestines and not push air through her GI Tract. We know from the biopsy that it is not Hershprungs Disease.
Miscellaneous updates: We aren’t sure when our house will be put back together. We have been in constant contact with insurance adjusters, agents and repairmen. We aren’t even sure to the exact extent of the damage. Yesterday we learned that more of our kitchen is likely damaged than expected. So maybe we’ll get some new cabinets and such. At least that could be a positive.
We aren’t sure exactly when we will be leaving the hospital either. We are going to speak with some of the doctors about home care… what to look for, what to avoid, what to expect, etc.
The following quoted material has been taken from a message sent by one of Ryan’s sorority about a March of Dime’s Walk:
"I am sure you have all heard about Ellie Kate. Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor.
We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena. … We appreciate everything you do and we hope to see you soon!"
Everyone is welcomed to join us as we walk next Saturday in honor of Ellie Kate. The walk begins downtown at the Myriad Gardens. Registration is at 8:30 and the walk begins around 9:30am. Our family will be there and we look forward to seeing anyone who would like to attend. For more specific details and for t-shirt info, contact the ladies above.
Lastly, thank you for your unwavering support and prayers. We are blessed to have such friends and family that love us and care for us. I think everyone desires a pat on the back. You know you deserve it… come on, start patting yourself.
- MFM
Though He slay me, yet will I trust Him. Job 13:15
Wednesday, April 26, 2006
Friday, April 21, 2006
April 21, 2006
Dearest Friends and Prayer Partners,
Thank you for continuously lifting us up in prayer! We are still watching and waiting - taking it a day at a time here at Children's Hospital. Everyone has been great (especially our nurses:)), and the teams are working hard to find a solution to EKM's problems.
As of now, she is still having a few seizures. Her heart rate has been inconsistent, and there are times when it stays quite low. But, the doctors are not too alarmed. She is on all the proper medication for both of these things - the rest is just in God's hands.
X-Rays yesterday and today show a "possible obstruction" once again, and it is just baffling the doctors. They will be working on that today trying to figure out what to do next. Meanwhile, EKM is being fed breast milk via an NG tube in her nose, and is recieving lots of nutrition through her TPN (temporary feeding she recieves through her IV). She continues to slowly gain weight, which is great considering all that she has been through!
Below is an excerpt from an email on behalf of Ellie Kate. The undergraduates in my sorority house (Alpha Gamma Delta at UCO) are putting some incredible things together for our family. They will be walking for EKM in May during the March of Dimes. We are completely overwhelmed by this precious gesture! I am so proud to be part of this amazing group of young women. Others are welcome to participate and walk as well! Just contact the girls listed below in the email:
"Hello Ladies,
I am sure you have all heard about Ellie Kate. Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor. Jackson our Purchasing Coordinator is having t-shirts made for the girls to walk in that are blue and say " I'm running for Ellie Kate" , so if you are interested please contact Jackson.
We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena. Lastly, April 25, 2006 Alpha Gams will be waitressing at Pizza Hut Italian bistro on Memorial and May during lunch and dinner to also help with awareness. Please come out and support us! We appreciate everything you do and we hope to see you soon!"
Much love to everyone. We will update again as things develop!
Ryan
Thank you for continuously lifting us up in prayer! We are still watching and waiting - taking it a day at a time here at Children's Hospital. Everyone has been great (especially our nurses:)), and the teams are working hard to find a solution to EKM's problems.
As of now, she is still having a few seizures. Her heart rate has been inconsistent, and there are times when it stays quite low. But, the doctors are not too alarmed. She is on all the proper medication for both of these things - the rest is just in God's hands.
X-Rays yesterday and today show a "possible obstruction" once again, and it is just baffling the doctors. They will be working on that today trying to figure out what to do next. Meanwhile, EKM is being fed breast milk via an NG tube in her nose, and is recieving lots of nutrition through her TPN (temporary feeding she recieves through her IV). She continues to slowly gain weight, which is great considering all that she has been through!
Below is an excerpt from an email on behalf of Ellie Kate. The undergraduates in my sorority house (Alpha Gamma Delta at UCO) are putting some incredible things together for our family. They will be walking for EKM in May during the March of Dimes. We are completely overwhelmed by this precious gesture! I am so proud to be part of this amazing group of young women. Others are welcome to participate and walk as well! Just contact the girls listed below in the email:
"Hello Ladies,
I am sure you have all heard about Ellie Kate. Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor. Jackson our Purchasing Coordinator is having t-shirts made for the girls to walk in that are blue and say " I'm running for Ellie Kate" , so if you are interested please contact Jackson.
We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena. Lastly, April 25, 2006 Alpha Gams will be waitressing at Pizza Hut Italian bistro on Memorial and May during lunch and dinner to also help with awareness. Please come out and support us! We appreciate everything you do and we hope to see you soon!"
Much love to everyone. We will update again as things develop!
Ryan
Monday, April 17, 2006
April 17, 2006
Dear Friends and Family,
I hope you had a blessed Easter! We had a great Easter, but spent the holiday in the hospital - much like we did with Christmas, New Year's and Mike's bday. OU Children's Hospital has been great. As Mike posted earlier, the facilities are pretty outdated, but the staff is incredible.
As for EKM - most importantly, she is no longer in pain. We are so glad that we made the move from Baptist to here if only for that reason alone! No more hours of crying, screaming, and painful movements. Though sedated, EK is able to have moments of alertness.
These past few days have been precious. We know we are limited on time, although unsure of just how limited we truly are. We have had a lot of family time and have been taking many pictures and videos of our darling girl. Ellie is still have seizures - quite frequently, although the severity of the seizures has decreased dramatically.
Right now the plan is to seek out all options we have concerning EK. She is still not tolerating her feeds, but is receiving nutrition through her main line (located now in her chest). Doctors have changed meds and her tummy seems to be much more comfortable. We will continue to consult with the professionals here until we have sought out every possible treatment and remedy. We have now though come to the conclusion that Ellie's NKH is rapidly progressing.
Another crazy thing happened to us this weekend as well - our hot water tank busted in our house! The funny thing (well, funny to us) is that the hot water tank is in our attic. Soooooo, our attic and ceilings have flooded! We will have to replace ceilings,walls, cabinets, and possibly some furniture due to the destruction. God is good though because Mike's parents happened to be at the house while it happened, and we were able to turn off the water before it caused damage to the entire house. Thank goodness for home owner's insurance!
Ways to Pray:
1. That EKM will continue to be at peace and not in pain
2. Pray for wisdom for the docs
3. Pray for us that we would have peace and wisdom
4. Pray that we would be prepared for the future
5. That VERY SOON our family would be reunited and we can go home (wherever that might be, just not in a hospital!!)
Thank you so very much for all of your prayers, love, concern, calls, notes, hugs, etc. You are such an encouragement to us! We love you all dearly.
Ryan
Is. 43:10
I hope you had a blessed Easter! We had a great Easter, but spent the holiday in the hospital - much like we did with Christmas, New Year's and Mike's bday. OU Children's Hospital has been great. As Mike posted earlier, the facilities are pretty outdated, but the staff is incredible.
As for EKM - most importantly, she is no longer in pain. We are so glad that we made the move from Baptist to here if only for that reason alone! No more hours of crying, screaming, and painful movements. Though sedated, EK is able to have moments of alertness.
These past few days have been precious. We know we are limited on time, although unsure of just how limited we truly are. We have had a lot of family time and have been taking many pictures and videos of our darling girl. Ellie is still have seizures - quite frequently, although the severity of the seizures has decreased dramatically.
Right now the plan is to seek out all options we have concerning EK. She is still not tolerating her feeds, but is receiving nutrition through her main line (located now in her chest). Doctors have changed meds and her tummy seems to be much more comfortable. We will continue to consult with the professionals here until we have sought out every possible treatment and remedy. We have now though come to the conclusion that Ellie's NKH is rapidly progressing.
Another crazy thing happened to us this weekend as well - our hot water tank busted in our house! The funny thing (well, funny to us) is that the hot water tank is in our attic. Soooooo, our attic and ceilings have flooded! We will have to replace ceilings,walls, cabinets, and possibly some furniture due to the destruction. God is good though because Mike's parents happened to be at the house while it happened, and we were able to turn off the water before it caused damage to the entire house. Thank goodness for home owner's insurance!
Ways to Pray:
1. That EKM will continue to be at peace and not in pain
2. Pray for wisdom for the docs
3. Pray for us that we would have peace and wisdom
4. Pray that we would be prepared for the future
5. That VERY SOON our family would be reunited and we can go home (wherever that might be, just not in a hospital!!)
Thank you so very much for all of your prayers, love, concern, calls, notes, hugs, etc. You are such an encouragement to us! We love you all dearly.
Ryan
Is. 43:10
Friday, April 14, 2006
April 14, 2006
We've made the move to OU Children's Hospital. It's a completely different environment, but then again, we didn't pick this hospital for its paint scheme or floor plan and layouts. Ellie's geneticist saw her last night at 11:00 PM, so the move has already shown itself to be beneficial.
As some of our first updates stated, Ellie's disorder is devastating. NonKetotic Hyperglycinemia (or Glycine Encephalopathy) is an extremely rare metabolic disorder that is destructive to the body even when on an aggressive medicine regime. I lead with that to say this: Ellie is experiencing more and more seizures. They are coming harder and longer. We are adimently trying to counter them with the appropriate meds but this is proving difficult.
We are still fighting for our daughter. We love you and thoroughly appreciate your prayers, thoughts and support.
- MFM
As some of our first updates stated, Ellie's disorder is devastating. NonKetotic Hyperglycinemia (or Glycine Encephalopathy) is an extremely rare metabolic disorder that is destructive to the body even when on an aggressive medicine regime. I lead with that to say this: Ellie is experiencing more and more seizures. They are coming harder and longer. We are adimently trying to counter them with the appropriate meds but this is proving difficult.
We are still fighting for our daughter. We love you and thoroughly appreciate your prayers, thoughts and support.
- MFM
Thursday, April 13, 2006
April 13, 2006
The last 2-3 days have been very difficult. Elizabeth has experienced some seizures. They are partial or focal seizures... lasting anywhere from 5-20 seconds. That could be a reaction to some of the new medicines she is on or an advancing of her condition. It's too difficult to tell right now.
The other difficult news has been that her veins are growing tired faster and faster from the many IV sticks. So much so that she had to undergo surgery today to place a catheter style main-line in her chest. This will allow her once again resume IV feedings and IV medicine.
The bigger news of all this is that we are trying to get her transferred to OU Children's Hospital. Her specialists are there and being a college, they naturally have more specialists in all the other areas as well. The reason why we haven't been there the entire time is, bed space. OU Children's bed space almost always fills up faster than Baptist so we always get diverted to Baptist.
We'll keep you all updated as soon as something changes.
The other difficult news has been that her veins are growing tired faster and faster from the many IV sticks. So much so that she had to undergo surgery today to place a catheter style main-line in her chest. This will allow her once again resume IV feedings and IV medicine.
The bigger news of all this is that we are trying to get her transferred to OU Children's Hospital. Her specialists are there and being a college, they naturally have more specialists in all the other areas as well. The reason why we haven't been there the entire time is, bed space. OU Children's bed space almost always fills up faster than Baptist so we always get diverted to Baptist.
We'll keep you all updated as soon as something changes.
Monday, April 10, 2006
April 10, 2006
This is going to be one of the weirdest and funniest posts ever but... Ellie Kate pooped last night. She did it all on her own, with no help from Glycerin, enema, suppository or the like. Her stomach was battling all night last night, causing her quite a bit of pain and discomfort... but after a few hours, she finally got some relief. Hopefully this is a sign that things are not only moving around in her system but moving through her system.
This may or may not be a news flash but Ellie Kate is a fire cracker. This morning she decided that she was tired of where the IV was so she pulled it out. This isn't the first time she randomly started pulling at her tubes and lines. So she spent a good part of this morning being held down by a team of nurses while they found another place for her IV (her foot). I'm not sure if there is a weight-lifting competition for 4 month olds but EKM would win if there was such a thing. She is ridiculously strong. But she is way cute, and by way cute, I mean totally beautiful.
Once again, we'll meet with our handful of doctors and update this page as we get updated.
Here are some prayer suggestions for those with the time:
(1) pray that EKM will continue to have movements, which in turn will eliminate all the barium in her system.
(2) pray that her system will return to its normal motility and function.
(3) pray for her momma, Ryan Elizabeth... this has been a long and grueling ordeal for Ryan. She is very tired and wants to take EKM home.
(4) pray for Conner, he's tired of not having his parents at home.
- MFM
This may or may not be a news flash but Ellie Kate is a fire cracker. This morning she decided that she was tired of where the IV was so she pulled it out. This isn't the first time she randomly started pulling at her tubes and lines. So she spent a good part of this morning being held down by a team of nurses while they found another place for her IV (her foot). I'm not sure if there is a weight-lifting competition for 4 month olds but EKM would win if there was such a thing. She is ridiculously strong. But she is way cute, and by way cute, I mean totally beautiful.
Once again, we'll meet with our handful of doctors and update this page as we get updated.
Here are some prayer suggestions for those with the time:
(1) pray that EKM will continue to have movements, which in turn will eliminate all the barium in her system.
(2) pray that her system will return to its normal motility and function.
(3) pray for her momma, Ryan Elizabeth... this has been a long and grueling ordeal for Ryan. She is very tired and wants to take EKM home.
(4) pray for Conner, he's tired of not having his parents at home.
- MFM
Friday, April 7, 2006
April 7, 2006
What we've learned up to this point is that something is wrong with Ellie Kate's small intestine. The word that is used to describe what is wrong is "ileus"... meaning intestinal obstruction. We don't know if this is an intermittent obstruction, partial obstruction or (as one doctor has hypothesized) a showing of poor muscle tone related to NKH. The last possibility is something that I dispute, based on no literature that I've found to support it but he is a doctor and might be smarter than me.... might.
Anyway, the treatment regime is consisting of TPN, reglan, and 1-2 ozs of milk every 3 hours. We'll try this approach to see if it (A) stimulates her small intestine and (B) the reglan helps the ileus. If this doesn't work we will probably transport EKM to another facility... possibly back to Houston.
Pray that Ellie Kate's small intestine will start to clear up and function properly again. We'll keep you updated once we receive updates.
- MFM
Anyway, the treatment regime is consisting of TPN, reglan, and 1-2 ozs of milk every 3 hours. We'll try this approach to see if it (A) stimulates her small intestine and (B) the reglan helps the ileus. If this doesn't work we will probably transport EKM to another facility... possibly back to Houston.
Pray that Ellie Kate's small intestine will start to clear up and function properly again. We'll keep you updated once we receive updates.
- MFM
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