Hi again,
So I know I have asked for a lot of prayers lately. And you all have been AMAZING with sending up prayers for Kenya, and then also for my friend's baby Ainsley when she was sick. And here I am again asking for more, but this time they are for me.
A little precaution... this stuff about me is a little yucky and disturbing. So if you want to just close this blog out right now and say "Dear God, please help Kristin get better", I am 100% good with that. But if you want to know more details, read at your own risk.
So to start off, my recovery from the birth... not sure how to put this nicely, but basically, because of the way the doctors handled the birth and because of the trauma, the damage done was both internal and external and very, very severe. Like as in, as severe as it can get. I will spare all the yucky details of what this means, but the doctor told me last week that I should expect 6 months before being able to sit again. This was a hard pill for me to swallow. She said I shouldn't be spending more than 20 minutes a day on my feet. Which... to answer a lot of your questions that I've been getting ... this means I can't start or run a safehouse right now... I can't look for a teaching job around here... and I can't adequately care for my daughter or myself without a lot of help (thankfully though I am blessed with wonderful family who are taking care of both of us). I am supposed to start physical therapy in a few weeks once I am a little better and start the long road to recovery.
I know I explained before, vaguely, that I had some infections when I got to the states. You can skip this paragraph if you want. But if you want to know, this is what happened... when I was in the hospital with Kenya and taking care of her in the DR, I kinda stopped taking care of me.... which meant that my stitches tore open again and got a lot worse... and then they got infected... and then the infection spread into my bladder. These are what I was talking about when I said I had infections coming into the states. I went to the ER when we got here and started the anti-biotic Keflex. And I was starting to get better... BUT... after finishing the med, I started getting really severe flu symptoms. And they have lasted for 8 days now. (not the way I planned on losing my baby weight) And I'm trying not to worry, but they are getting worse, not better, and I am really hoping and praying that I don't have one of the rare, long-term side effects listed for Keflex. This has had me pretty low lately (literally on the bathroom floor kinda low) and I think Kenya is ready for something other than Gatorade and saltines in her diet, so if you would pray for this, I would appreciate this too.
One last thing... and this might sound really shallow and superficial to ask for prayer for this in comparison to everything else, but I am going to ask anyways. When we left the DR to come to the states, we booked plane tickets as soon as we got Kenya's passport and went straight to the airport without stopping home to pack a suitcase. So we left everything behind and came with not much more than the clothes on our backs (and some things our awesome brother and sister in law Tim and Paola sent to the airport for us and Kenya too). And we were okay with leaving everything we own behind cause it's just stuff... and the most important thing is our daughter. But one of the things I left behind was my wedding ring (cause I was too swollen to wear it at the end of my pregnancy) and now it's lost/stolen and no one can find it (along with some of our other valuables that were lost/stolen, but this is what I'm the most worried about). I know in the grand scheme of things, it is just a thing and is not important at all but I still can't help but be sad about it and hope and pray that it will turn up.
So this is it... there is some other junk too... but I will spare you that stuff cause this is what I'd like you to please pray for. And I hope it doesn't sound like I'm just venting and complaining because I know I am SOOO blessed to have my baby girl healthy again and I am so thankful for that. So please don't get me wrong. I seriously cannot thank God enough for the miracles He has done. I know that we are oh so blessed. But if you would be willing to now pray for me, not for a miracle, but just that I can get just a little better, just enough to be able to take care of my baby girl again and enjoy her and this time with her, that would mean a lot to me. And please continue to pray for Baby Kenya too as she transitions to life here. After all that she has been through, being pumped full of so many drugs and with me being so sick, it has not been easy for her. But she is such a trooper and is doing great considering all she has been through.
Thanks for all of your prayers, and for all of your kindness and generosity in helping us these past few weeks, it has meant so much to us. Also, please please forgive me if you contacted me and I haven't gotten back to you. I was doing good getting back to people until I got knocked on the floor sick and I know there are a lot of people I haven't been in touch with, so please forgive me as I continue to slowly get back to everyone.
Also, since I'm asking for all of these prayers for me, please let me know if I can pray for YOU. Since I'm restricted to total bedrest, there is not a lot I can do these days, but prayer is something that I can do. And it will help me to keep me head up while I'm down and help me not to focus so much on my own issues but on others, so I would love to create a prayer list of other people I can pray for.
Okay, that's all for now. Thanks again to all of you for your continuous love, prayers, and support.
Love,
Kristin
Jul 24, 2012
Jul 18, 2012
Big Miracles for Little Girls
Hope this blog post finds you all well. Not sure how many of you saw my blog post from yesterday about my friend Christina Gazzarari Hall and her sweet baby girl Ainsley who was diagnosed yesterday with Cystic Fibrosis. I didn't share the post on facebook yet cause I was waiting on Christina's permission, but for those who found it anyways, thank you so much for your prayers, and for those who haven't read it, let me give you a quick recap.
Christina and I are friends from middle and high school and though we've been far away from each other for a while, we both were excited to be pregnant with baby girls with close due dates together and were able to follow each other's pregnancies this year via facebook. Christina has been a super sweet supportive friend to me and has sent encouragement and has been praying for baby Kenya in these recent weeks. I was really excited for her when she delivered her sweet baby girl Ainsley last week and to see of all the gorgeous pics of her on facebook. Then I read Christina's devastating news yesterday that Ainsley was diagnosed with Cystic Fibrosis. I think being a new mom, and a new mom with the experience I have in these past weeks made my heart break in ways for Christina and her family that it never could have before. Last night, I cried and prayed and thought of Christina all night and couldn't sleep (who sleeps anyways with a newborn though right?). Lots of people were praying last night for Ainsley after getting this news. I wondered if God could make another miracle come true for baby Ainsley like He did for our little girl.
This morning, Dave told me there was another message from Christina in my inbox. I was hoping it would be her permission to post my blog asking for prayers. I asked him to read it right away. Instead of an answer about my blog, it was a note from Christina saying that the lab had called to report that they had screwed up little Ainsley's test results and that she doesn't really have cystic fibrosis. Are you kidding me?!? I can understand something like this happening in say, the DR, where lab tests are done using baby food jars to hold samples and scrap pieces of paper laying over them with all the personal info. But this is my friend from the U.S. of A. We don't make these kinds of mistakes in America do we?
All I know is I cried tears of joy and was so overwhelmed to hear this news for Christina and her family. And I wanted to let you all know that little baby Ainsley had a miracle happen in her life just like Kenya did. Thank you to everyone who has been praying for sweet baby Ainsley. I am so thankful to God for another miracle for this beautiful baby girl. I think God is on a roll these days with these baby girl miracles and I can't praise and thank Him enough for it!!
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| Thank you for your prayers for sweet baby Ainsley!! |
Jul 17, 2012
Prayers Needed for Baby Ainsley
To all of the awesome prayer warriors who have been praying for Kenya these past weeks without ceasing, I need your prayers again. This time for a good friend of mine, Christina Gazzarari Hall, who I grew up with and went to school with - even though we have been far apart for a long time, she was a special friend who will always hold a special place and special memories of in my heart. Christina also recently gave birth to a beautiful baby girl, Ainsley Elizabeth, just a few weeks after Kenya was born. I am hoping that our two baby girls will be able to meet each other soon.
Baby Ainsley was diagnosed today with Cystic Fibrosis. My heart has just been longing for Christina and her family as I know now that seeing your baby sick and worrying about your baby's health is the hardest thing a mom could ever go through. So I am asking you to please pray for Baby Ainsley just as you all have been praying so faithfully for Baby Kenya, and ask everyone you know to do the same. Pray that God would bring peace, comfort, and healing to Baby Ainsley and her family, and the very best doctors to treat her and take care of her every need.
Also, if you know of any resources that could be of help to Christina and her family, please let me know. She lives in Michigan in the Detroit area. Thanks for all of your prayers for Baby Ainsley!!
Love,
Kristin, Dave, and Kenya
Baby Ainsley was diagnosed today with Cystic Fibrosis. My heart has just been longing for Christina and her family as I know now that seeing your baby sick and worrying about your baby's health is the hardest thing a mom could ever go through. So I am asking you to please pray for Baby Ainsley just as you all have been praying so faithfully for Baby Kenya, and ask everyone you know to do the same. Pray that God would bring peace, comfort, and healing to Baby Ainsley and her family, and the very best doctors to treat her and take care of her every need.
Also, if you know of any resources that could be of help to Christina and her family, please let me know. She lives in Michigan in the Detroit area. Thanks for all of your prayers for Baby Ainsley!!
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| Sweet Baby Ainsley |
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| Please pray for this beautiful baby girl! |
Love,
Kristin, Dave, and Kenya
Jul 12, 2012
Kenya Update
Hi again,
Thank you to all who have been continuing to write with your concerns, encouragement, prayers, advice, etc. I know everyone wants to know how Kenya is doing and we are appreciative of the many, many people who care so much about our baby girl. I'm sorry I have not had time to write with an update sooner.
During Kenya's stay in the hospital, she had a lot of tests redone including a 24 hour video EEG, a cranial MRI, and a spinal MRI. We also got a lot of blood tests done, and received back our lab testes from Pennsylvania that tested Kenya for hundreds of metabolic and congential disorders. So far, all of the results have come back completely contradicting everything that the doctors told us in the DR. Her MRI is completely normal and shows no sign of any brain damage. The pediatric neurologist said her EEG does show some sharp transient brain waves, but says that this is non-epileptic type and is not doing any kind of brain damage. Other than that, her EEG was normal. All the blood work came back normal. We were totally confused by the outcome of this, and how different the results were from everything we had been told before in the DR. The ped. neurologist and epileptologist here said that Kenya likely has benign neonatal myclonus, which are non-epileptic seizure like activity that does no damage to the brain and that she will most likely grow out of by 8 months. The epileptologist also said it may be Sandifer's Syndrome, which is a rare type of GERD that causes seizure like behaviors right after feeding followed by crying spells. We were happy to hear both of these possible diagnosis, as they are so much better than anything we heard down in the DR. Then the doctors said they wanted to take her off the Keppra cold turkey. This part made me nervous, but they said they would keep her in the hospital with full monitoring for the next 24 hours to make sure there were no seizures. I was a little skeptical but felt okay since she would be right there in the hospital if the seizures came back. Kenya went through the next 24 hours seizure free. But we also knew that the Keppra would take up to 3 days to fully leave her system. So when they wanted to discharge her Monday night with no meds, I was still feeling pretty anxious. They reassured me that she would be okay, the hospital is only 10 minutes away and we now are in a place with 911 and ambulances that can rush her in as needed. I was still really scared to leave. But 3 days later, Kenya still has had no real seizures. Confused? Surprised? Baffled? So are we.
Part of me feels like this all really was a bad dream. Like maybe I made it up in my head and none of it really happened. But I have reports from all of the doctors in the DR with her diagnosis... generalized secondary seizures... myoclonic seizures... traumatic brain injury... lack of oxygen to the brain during birth... Keppra for the next 5 years... start looking at therapy and rehabilitation.... possibility of developmental delays.... these are all things they told me that I could never forget. And whether they were "true" seizures or not, I cannot forget what I saw in Kenya in this last week... the rolling eyes, smacking lips, fisted hands, jerking limbs, rapid breathing, and the worst part, not being able to do anything to wake her up or get her to respond. And now, one week later with no medication, she is not exhibiting any of these behaviors.
We have been trying to figure out a logical explanation to all of this. The doctors have some ideas and we've had some of our own....
Maybe the doctors down there were just completely wrong and diagnosed her completely wrong. (but why did we see seizure activity there and not here?)
Maybe she has already grown out of the seizure activity.
Maybe it is something environmental that has to do with leaving the DR and coming to the states (allergy to the tropical oleander flower can cause seizures).
Or maybe, just maybe, God just decided to completely heal Kenya of her seizures. It seems crazy, but I know it's not impossible. Maybe our prayers, and those of so many others praying for Kenya, were answered. One of the doctors actually offered this answer himself.
Maybe this sounds totally naive. And maybe Kenya will start having seizures again tomorrow. Maybe she will still have health problems or special needs. Nothing is for sure. Except for this... we will continue to love Kenya through ANYTHING. We will continue to praise God and thank Him for the gift of Kenya no matter what happens. And we will always know how incredibly loved and supported Kenya is and remember how people near and far poured out their love and prayers on her in extraordinary ways. How people dropped everything they were doing and did anything they could to help her and help our family to bring her to safety.
A week ago I posted a blog and asked for help because I was scared for Kenya's life. Now I'm posting as she sleeps sweetly and peacefully beside me and can't express enough gratitude to God and to everyone else who has helped our baby girl. After 2 miscarraiges and a high-risk complicated pregnancy with Kenya, we were already calling Kenya our little miracle. Now I think we can say that with more certainty than ever.
We still are attending follow-up appointments, monitoring Kenya, and there are still a few test results coming in (poor baby girl was poked so many times but they still have some they have to redo due to insufficient blood supply). We will continue to post updates as more information comes in and we know more about Kenya's health status. But for now, all we can say is PRAISE THE LORD for Kenya and her recovery!
Thank you again to all those who have supported us through prayer, advice, encouragement, special contacts, help with the embassy, and financial help. Without each of you, we wouldn't have been able to get Kenya here to get the help that she needs. Thank you!!!
One more thing... I know a lot of people have been writing about coming to visit us. Right now we are still resting, recovering, and trying to get Kenya into a routine here so we are not ready for visitors. But if Kenya continues to do well, then in the next week I think we should be ready to see visitors. You can contact me via facebook or email to set this up. :)
Love,
Kristin, Dave, and Kenya
Thank you to all who have been continuing to write with your concerns, encouragement, prayers, advice, etc. I know everyone wants to know how Kenya is doing and we are appreciative of the many, many people who care so much about our baby girl. I'm sorry I have not had time to write with an update sooner.
During Kenya's stay in the hospital, she had a lot of tests redone including a 24 hour video EEG, a cranial MRI, and a spinal MRI. We also got a lot of blood tests done, and received back our lab testes from Pennsylvania that tested Kenya for hundreds of metabolic and congential disorders. So far, all of the results have come back completely contradicting everything that the doctors told us in the DR. Her MRI is completely normal and shows no sign of any brain damage. The pediatric neurologist said her EEG does show some sharp transient brain waves, but says that this is non-epileptic type and is not doing any kind of brain damage. Other than that, her EEG was normal. All the blood work came back normal. We were totally confused by the outcome of this, and how different the results were from everything we had been told before in the DR. The ped. neurologist and epileptologist here said that Kenya likely has benign neonatal myclonus, which are non-epileptic seizure like activity that does no damage to the brain and that she will most likely grow out of by 8 months. The epileptologist also said it may be Sandifer's Syndrome, which is a rare type of GERD that causes seizure like behaviors right after feeding followed by crying spells. We were happy to hear both of these possible diagnosis, as they are so much better than anything we heard down in the DR. Then the doctors said they wanted to take her off the Keppra cold turkey. This part made me nervous, but they said they would keep her in the hospital with full monitoring for the next 24 hours to make sure there were no seizures. I was a little skeptical but felt okay since she would be right there in the hospital if the seizures came back. Kenya went through the next 24 hours seizure free. But we also knew that the Keppra would take up to 3 days to fully leave her system. So when they wanted to discharge her Monday night with no meds, I was still feeling pretty anxious. They reassured me that she would be okay, the hospital is only 10 minutes away and we now are in a place with 911 and ambulances that can rush her in as needed. I was still really scared to leave. But 3 days later, Kenya still has had no real seizures. Confused? Surprised? Baffled? So are we.
Part of me feels like this all really was a bad dream. Like maybe I made it up in my head and none of it really happened. But I have reports from all of the doctors in the DR with her diagnosis... generalized secondary seizures... myoclonic seizures... traumatic brain injury... lack of oxygen to the brain during birth... Keppra for the next 5 years... start looking at therapy and rehabilitation.... possibility of developmental delays.... these are all things they told me that I could never forget. And whether they were "true" seizures or not, I cannot forget what I saw in Kenya in this last week... the rolling eyes, smacking lips, fisted hands, jerking limbs, rapid breathing, and the worst part, not being able to do anything to wake her up or get her to respond. And now, one week later with no medication, she is not exhibiting any of these behaviors.
We have been trying to figure out a logical explanation to all of this. The doctors have some ideas and we've had some of our own....
Maybe the doctors down there were just completely wrong and diagnosed her completely wrong. (but why did we see seizure activity there and not here?)
Maybe she has already grown out of the seizure activity.
Maybe it is something environmental that has to do with leaving the DR and coming to the states (allergy to the tropical oleander flower can cause seizures).
Or maybe, just maybe, God just decided to completely heal Kenya of her seizures. It seems crazy, but I know it's not impossible. Maybe our prayers, and those of so many others praying for Kenya, were answered. One of the doctors actually offered this answer himself.
Maybe this sounds totally naive. And maybe Kenya will start having seizures again tomorrow. Maybe she will still have health problems or special needs. Nothing is for sure. Except for this... we will continue to love Kenya through ANYTHING. We will continue to praise God and thank Him for the gift of Kenya no matter what happens. And we will always know how incredibly loved and supported Kenya is and remember how people near and far poured out their love and prayers on her in extraordinary ways. How people dropped everything they were doing and did anything they could to help her and help our family to bring her to safety.
A week ago I posted a blog and asked for help because I was scared for Kenya's life. Now I'm posting as she sleeps sweetly and peacefully beside me and can't express enough gratitude to God and to everyone else who has helped our baby girl. After 2 miscarraiges and a high-risk complicated pregnancy with Kenya, we were already calling Kenya our little miracle. Now I think we can say that with more certainty than ever.
We still are attending follow-up appointments, monitoring Kenya, and there are still a few test results coming in (poor baby girl was poked so many times but they still have some they have to redo due to insufficient blood supply). We will continue to post updates as more information comes in and we know more about Kenya's health status. But for now, all we can say is PRAISE THE LORD for Kenya and her recovery!
Thank you again to all those who have supported us through prayer, advice, encouragement, special contacts, help with the embassy, and financial help. Without each of you, we wouldn't have been able to get Kenya here to get the help that she needs. Thank you!!!
One more thing... I know a lot of people have been writing about coming to visit us. Right now we are still resting, recovering, and trying to get Kenya into a routine here so we are not ready for visitors. But if Kenya continues to do well, then in the next week I think we should be ready to see visitors. You can contact me via facebook or email to set this up. :)
Love,
Kristin, Dave, and Kenya
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| Kenya in her new crib at Uncle James and Auntie Lisa's house! |
Jul 10, 2012
3 weeks old!
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| All the kids and volunteers at NPH Orphanage have been praying and praying for you! They can't wait to meet you! |
Dear Kenya Doll,
What a week we've had! I don't know if there's any other baby out there who has had such an eventful and adventurous 3 weeks of life as you have had. It has been the most difficult of both of our lives, but also has been amazing to see such an outpour of love showered on you by so many and to see how God's mighty hand has been so at work through all of this.
The hardest part started in the DR going to hospitals in Santiago and Santo Domingo. I never knew it would be possible to miss someone so incredibly much as I missed you when we had to leave you in the NICU. Those 35 hours were the longest of my life. I spent most of them in prayer with other mommies in the waiting room outside of NICU. There were times I literally dropped to my knees, hugging and holding hands with complete strangers, somehow we helped each other to get through it all. I am still praying for a little baby girl named Dara who was there with dengue fever. Her mom Loida and I prayed for you guys non-stop and her entire church was also praying for you. I also spent lots of time trying to sweet talk the nurses and bringing them candy and treats trying to get past the door to see you. I swear that after all of this, I will never again take for granted the grand privilege I have in being able to see you, hold you, feed you, and just be with you everyday. It is hard to put you down now because I never want to stop holding you or looking at your beautiful little face. Sometimes we just don't know how good we've got it, but now I will never forget how amazingly blessed my life is for having you in it.
Once we knew we had to get you out of the DR and get you to better healthcare, this is when the real blessings begun. I decided to write a blog post reaching out for help to get you out of the DR and to the U.S. for help, and I never imagined in a million years the response that I have gotten. Since I wrote that blog, I have received thousands of hits and literally hundreds of emails and messages from people who want to help you. Dozens of people wrote state reps, congressmen, and others in government to expedite your passport. Doctors wrote letters of medical emergency to get you out. There was even a personal phone call in to vice president Joe Biden on your behalf! Your passport, which should usually take months, was finished and ready in less than 2 hours on a day when the embassy was closed. They all knew us and our story when we got there. AMAZING. And this isn't even the beginning. You have had invitations from across the country to come to the best hospitals. Lots of families across the country have opened up their homes to us. I have received countless emails from other parents of children with seizures who want to share all they can to support and help you. They even started a support group just for us where I can ask questions and learn more about how to help you. People are raising money all across the globe for you to make sure you will be provided for. There are fundraiser parties and events in your honor. And of course, all around the world, there are about a million bajillion prayers being sent up above just for you. The whole thing has been unbelievable and your dad and I are still trying to take it all in. To tell you that you are SO INCREDIBLY LOVED is too much of an understatement. There just aren't really words for it. Just remember baby girl, to never lose your faith in people and never lose your faith in God. Even though things don't always go as we plan, God has a plan in all of it. And, like Margaret Mead has said, never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. (in your case, it's actually quite a big group!)
Since we got to Devos Children's Hospital in Grand Rapids, you have been just as popular. You dad's cousin Daniel works there and had their whole team ready and waiting for us when we got there Friday night. All the staff were gushing and gushing over what a gorgeous baby you are and everyone was so eager to help us. Your dad and I felt a sense of peace being around such kind and wonderful staff there. And the hospital was so beautiful that we kept saying we felt like we were in an all-inclusive resort. The very best part is that your dad and I had a pull-out bed right in the room with you so we could be with you all the time. I was SO relieved that I didn't have to leave you in the NICU again. We were hugely blessed during all of our time there.
Now we are back staying with your Uncle James and Auntie Lisa. We are still waiting on more tests to come back and don't know anything for sure, but the doctors all have high hopes for you. We all do too. I know that God has some huge plans for your life and that He is holding you in the palm of His hand and that I don't have to worry anymore. And there are SOOOOO many people lifting you up every single day in prayer. But I want you to remember that no matter what the outcome of all of this, you are already perfect to us and always will be. And we will love you unconditionally with all of our hearts until the day we die. You are the absolute love of our lives and we will never stop thanking God for bringing you into our lives.
Well little chica, I think that is all for this week. We are all tired and it looks like you want to eat now too. So time to eat and go and get some sweet dreams. Will write again soon. We love you to the moon and back.
xoxoxoxoxooxoxxoxoxo
Love,
Your momma
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| Your first time at the airport and first time flying! And your first time in the USA!! (lots of firsts this week!) |
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| The lactation consultant at the hospital taught us how to have skin to skin time - we were loving it! |
Jul 7, 2012
In the U.S.A.
Hi again,
First I want to say a million thanks for all of the love, prayers, support, encouragement, advice, referrals, donations, and all else that you all have done to help us during this time with Kenya. I can't express enough how deeply touched our family is by the overwhelming amount of support we have received these past few days.
Yesterday was a very blessed day. We went to the American Consulate first thing in the morning and even though they were closed, they let us in and they were able to process her passport in less than 3 hours (usually this can take months). So a huge thanks to all those who put a word in to get that process going. The staff there were expecting us and were super helpful in getting the process done quickly.
We then were able to find a flight to fly out at 2:30 yesterday afternoon and had smooth flights with no problems (thanks Delta). Kenya did great for her first time flying and the pilot even gave her a little pair of wings pin. We arrived into Grand Rapids last night at 10:00 and Dave's brother James and his wife Lisa picked us up and took us directly to Devos Children's Hospital from the airport. The staff here knew Kenya's story and got Kenya right in to the ER and the staff were so incredibly friendly and wonderful. The hospital is beautiful and we have our own room with a pull-out bed where we can stay with Kenya at all times and nurses are available 24 hours to help us. We were so so happy that we didn't have to let Kenya go to NICU again and I am able to continue feeding her, holding her, and caring for her.
After getting Kenya situated that night, my sister-in-law took me into the adult ER and I was able to get checked out no problem, and get on anti-biotics right away for my infections. Happy to have that taken care of and know that I will be getting better so I can better take care of my sweet baby girl. It is easy to see how God's hand was working through everything yesterday and we are so grateful to be able to here with Kenya.
Today Kenya is hooked up getting a 24 hour EEG. The staff were super careful putting this on her and she has her head all covered up in a little gauze helmet, she looks so cute. Tomorrow she will get a cranial MRI. Even though she has to get all of these tests and everything done all over again, it is so good to have them done by such caring people who we feel like we can trust.
Thank you again to everyone who has been instrumental in helping Kenya get to the states and getting her the care she needs, whether through prayer, donations, advice, or making contacts to help Kenya out. We can't say enough how blessed we feel to have so many people who love and want to help our baby girl.
Will continue to keep you all posted... keep the prayers coming! :)
Love,
Kristin, Dave, and Kenya
First I want to say a million thanks for all of the love, prayers, support, encouragement, advice, referrals, donations, and all else that you all have done to help us during this time with Kenya. I can't express enough how deeply touched our family is by the overwhelming amount of support we have received these past few days.
Yesterday was a very blessed day. We went to the American Consulate first thing in the morning and even though they were closed, they let us in and they were able to process her passport in less than 3 hours (usually this can take months). So a huge thanks to all those who put a word in to get that process going. The staff there were expecting us and were super helpful in getting the process done quickly.
We then were able to find a flight to fly out at 2:30 yesterday afternoon and had smooth flights with no problems (thanks Delta). Kenya did great for her first time flying and the pilot even gave her a little pair of wings pin. We arrived into Grand Rapids last night at 10:00 and Dave's brother James and his wife Lisa picked us up and took us directly to Devos Children's Hospital from the airport. The staff here knew Kenya's story and got Kenya right in to the ER and the staff were so incredibly friendly and wonderful. The hospital is beautiful and we have our own room with a pull-out bed where we can stay with Kenya at all times and nurses are available 24 hours to help us. We were so so happy that we didn't have to let Kenya go to NICU again and I am able to continue feeding her, holding her, and caring for her.
After getting Kenya situated that night, my sister-in-law took me into the adult ER and I was able to get checked out no problem, and get on anti-biotics right away for my infections. Happy to have that taken care of and know that I will be getting better so I can better take care of my sweet baby girl. It is easy to see how God's hand was working through everything yesterday and we are so grateful to be able to here with Kenya.
Today Kenya is hooked up getting a 24 hour EEG. The staff were super careful putting this on her and she has her head all covered up in a little gauze helmet, she looks so cute. Tomorrow she will get a cranial MRI. Even though she has to get all of these tests and everything done all over again, it is so good to have them done by such caring people who we feel like we can trust.
Thank you again to everyone who has been instrumental in helping Kenya get to the states and getting her the care she needs, whether through prayer, donations, advice, or making contacts to help Kenya out. We can't say enough how blessed we feel to have so many people who love and want to help our baby girl.
Will continue to keep you all posted... keep the prayers coming! :)
Love,
Kristin, Dave, and Kenya
Jul 5, 2012
Baby Kenya Update
Hi again,
I want to say thank you so much for all of the love, support, and prayers that so many have poured out on our family and for baby Kenya. I can't tell you enough how much it means to us. I still am sorting through all of the messages via blog, facebook, email, skype, and phone. I apologize if I have not gotten back to you yet.
For those who would like to make a donation to help baby Kenya, checks may be made out to David DeYoung and mailed to this address:
32854 Red Oaks Trail
Beverly Hills, Michigan 48025
Dave has also set up a PayPal account that you can donate to that you should be able to find on the right side of the blog. Please let us know if this does not work for you. We are so thankful for these gifts so many have been so generous to share with us. This will help us in getting to the states and getting the medical help for Kenya that she desperately needs.
Right now Kenya is still having about 1-2 seizures an hour. The seizures are shorter in duration, lasting about 1-3 minutes - these are mainly focal seizures where her eyes roll back and she smacks her lips. We are also seeing what appear to be myoclonic seizures, where she jerks all of her limbs at the same time, but her face is alert and her eyes are open. We are not sure if that is what we are seeing or not. Sometimes we think we are also seeing absence seizures but again we are not sure about this. We are trying to upload videos onto youtube so if you would like to see this if you think you can identify what are and are not seizures, this would be very helpful to us, so just let us know.
We talked to the pediatric neurologist here and she recommended to keep Kenya on the 200 mg a day of Keppra and call her tomorrow around 10a.m. if she is still having seizures and they will add 20 of Phenobarbitral tomorrow if she is still having seizures. However, the doctors who we have talked to from the states feel that we should take her off the Keppra and just try the Phenobarbitral. We are having a hard time making the right decisions on our own. We are continuing to talk to the doctors we have been referred to in the states to make these decisions. We would be grateful for any additional advice you may have and will continue to keep checking the blog for this info.
We are trying to get into the American embassy but they are closed until Monday. We are trying to talk to whoever we can to pull strings to get us in there tomorrow and start the passport process. If you know of someone who could help put a word in for us, please let us know. I think the more people who can help with this, the better.
We have not decided yet where we will take Baby Kenya in the states for medical care. We are looking at Devos Children's Hospital, Detroit Children's Hospital, Boston Children's Hospital, Shriner's Children's Hospital, and a few more. If you would like to share your opinion/experiences, please let us know. We prefer to stay in Michigan to be close to family, but are willing to take Kenya wherever she needs to go to get the best medical care.
Thank you again for the overwhelming amount of support, prayers, love, encouragement, and advice you have all been showering upon us. I will do my best to get back to each person as I am able, but right now a lot of our focus is just on Baby Kenya, her seizures, and the passport situation. But please know I am grateful to each and every one of you.
Please keep praying for Baby Kenya and that God will work a miracle in her and help us to get her the best medical help in the states.
Much love,
Kristin, Dave, and Kenya DeYoung
I want to say thank you so much for all of the love, support, and prayers that so many have poured out on our family and for baby Kenya. I can't tell you enough how much it means to us. I still am sorting through all of the messages via blog, facebook, email, skype, and phone. I apologize if I have not gotten back to you yet.
For those who would like to make a donation to help baby Kenya, checks may be made out to David DeYoung and mailed to this address:
32854 Red Oaks Trail
Beverly Hills, Michigan 48025
Dave has also set up a PayPal account that you can donate to that you should be able to find on the right side of the blog. Please let us know if this does not work for you. We are so thankful for these gifts so many have been so generous to share with us. This will help us in getting to the states and getting the medical help for Kenya that she desperately needs.
Right now Kenya is still having about 1-2 seizures an hour. The seizures are shorter in duration, lasting about 1-3 minutes - these are mainly focal seizures where her eyes roll back and she smacks her lips. We are also seeing what appear to be myoclonic seizures, where she jerks all of her limbs at the same time, but her face is alert and her eyes are open. We are not sure if that is what we are seeing or not. Sometimes we think we are also seeing absence seizures but again we are not sure about this. We are trying to upload videos onto youtube so if you would like to see this if you think you can identify what are and are not seizures, this would be very helpful to us, so just let us know.
We talked to the pediatric neurologist here and she recommended to keep Kenya on the 200 mg a day of Keppra and call her tomorrow around 10a.m. if she is still having seizures and they will add 20 of Phenobarbitral tomorrow if she is still having seizures. However, the doctors who we have talked to from the states feel that we should take her off the Keppra and just try the Phenobarbitral. We are having a hard time making the right decisions on our own. We are continuing to talk to the doctors we have been referred to in the states to make these decisions. We would be grateful for any additional advice you may have and will continue to keep checking the blog for this info.
We are trying to get into the American embassy but they are closed until Monday. We are trying to talk to whoever we can to pull strings to get us in there tomorrow and start the passport process. If you know of someone who could help put a word in for us, please let us know. I think the more people who can help with this, the better.
We have not decided yet where we will take Baby Kenya in the states for medical care. We are looking at Devos Children's Hospital, Detroit Children's Hospital, Boston Children's Hospital, Shriner's Children's Hospital, and a few more. If you would like to share your opinion/experiences, please let us know. We prefer to stay in Michigan to be close to family, but are willing to take Kenya wherever she needs to go to get the best medical care.
Thank you again for the overwhelming amount of support, prayers, love, encouragement, and advice you have all been showering upon us. I will do my best to get back to each person as I am able, but right now a lot of our focus is just on Baby Kenya, her seizures, and the passport situation. But please know I am grateful to each and every one of you.
Please keep praying for Baby Kenya and that God will work a miracle in her and help us to get her the best medical help in the states.
Much love,
Kristin, Dave, and Kenya DeYoung
Prayers and help for Baby Kenya
Hi friends and family,
I'm sorry to those I have been out of touch with in these past few weeks. For those who do not already know, we had a very traumatic birth experience here in the DR as the doctors made some poor medical decisions and we have been trying to recover from this experience. Obviously this post will not be a part of Kenya's baby book we are making, but rather we wanted to inform people about what is going on and ask for your help.
This past Saturday night, Kenya began having seizures during the night. We suspected she was having seizures before this but we were not sure. We went into the ER Saturday night in Santiago but waited for 10 hours without seeing a doctor and they wouldn't take us seriously, saying that she was just making "facial gestures" and refusing to check her. So we left Santiago and went to Santo Domingo, the capital, where Dave's brother Tim and his family live and they have been helping us find people to see Kenya. On Monday she saw a ped. neurologist, general neur., and pediatrician, who all confirmed that she was having seizures and said they believe it was from the trauma during birth. We ordered some tests to get done the next day and the neur. asked us to stay up during the night tracking and timing her seizures. She had 2 seizures in a row Monday night that lasted more than 20 minutes each and the neur. said this was a medical emergency and to get her into the ER in Santo Domingo. They put her in the NICU for the next 34 hours which made those the worst 34 hours of our lives (if you can imagine what it's like to leave your baby in a NICU already, try to imagine the hell of leaving your baby in an NICU in a developing country). They put her on 5 medications which left her as a completely different baby, all drugged up, extremely sedated and unhappy. This has been killing us to see her like this. Kenya went through a bunch of tests including cranial ultrasound, cranial MRI, an EEG, blood tests, hypoglicemia, etc. on Tuesday and Wednesday. We also had a test sent to the states to test for metabolic and congenital causes of epilepsy and are waiting for those results.
The tests from the MRI and EEG came back to confirm she has generalized secondary neonatal seizures. They believe this is related to the trauma that occurred during birth. Finally they released her from the NICU and sent her home on Keppra anti-seizure medication and told us she would need to take this med for a minimum of the next 5 years. They make her extremely sedated and unhappy, and she has no muscle tone. We are checking all the time just to make sure she is still breathing. It breaks our heart because we feel like she is like an entirely different baby. She also continued to have seizures even with this medication. We called the doctor last night and she doubled her dose of this med last night. So even though the med. is not recommended for infants under 1 month, and a baby of her weight should be taking approx. 40 milligrams a day, Kenya is taking 200 milligrams a day - 5 times the recommended dose for her weight. We were told not to worry about the side effects right now of what this is doing to her, but just try to get the seizures under control because the seizures are what is most dangerous to her right now. But the worst part is that even on all this medication, she is continuing to have seizures and had them throughout last night and this morning. We don't know what to do.
Dave and I have been praying and praying and praying for Baby Kenya. We don't know what else to do at this point to help her. We have never been so scared or discouraged in our lives. We keep praying that at some point we will wake up and realize this was all a bad dream.
We are trying to declare medical emergency so we can speed up her passport and somehow get her to the states. We don't have health insurance for her in the states so we are trying to find hospitals that offer free children's healthcare. We have been recommended Shriner's Children's Hospital in Memphis, Tennessee but would love to hear more ideas and suggestions from anyone who has them. We are afraid applying to get on Medicaid would take too long.
We are seeking advice and suggestions from anyone who knows anything about epilepsy in children and what we can do. Dave and I are staying up around the clock to monitor, time, and record her seizures but we have a lot of questions about whether we are doing this correctly. If you know about seizures and are able to help us with this, please let us know. If you have contacts with any ped. neurologists in the states we can talk to, we would be thankful to have a contact like this.
We are not seeking your sympathy with this situation but rather just ask for tons of prayer for Kenya and for our family. Dave and I are really run down and struggling. I had severe damage from the implications of the birth and it has gotten a lot worse and infected as I have been pushing myself this last week to help Kenya. I will probably need to get surgery to repair this sometime in the future. Dave is sick with what may be some kind of parasite and is really run down. Thankfully we are staying with his brother Tim and his family who live in the capital and they are taking good care of all of us. For the time being, we are going to stay here in the capital where Kenya has access to better medical care and we do not know when we will return to Jarabacoa at this time.
Please understand that we do not have time to respond to personal emails and phone calls at this time, unless they are medically related. We need to put all our time right now into helping Kenya get her seizures under control and getting her the best healthcare possible.
Also, if you feel led to make a financial donation to help with Kenya's medical expenses, please let us know. We have already maxed out all of her health insurance that is covered under my insurance plan, and need to get her on a new plan for the rest of her time here. In the meantime, medical expenses are coming out of pocket and neither of us are able to work at this time. If you feel led to help us out with these expenses, please let us know.
Thank you for your prayers and help. We are grateful to know we have so much support in our friends and family in all different places around the world, and that we have your love and prayers. Please continue to pray for Baby Kenya.
Love,
Dave, Kristin, and Baby Kenya
I'm sorry to those I have been out of touch with in these past few weeks. For those who do not already know, we had a very traumatic birth experience here in the DR as the doctors made some poor medical decisions and we have been trying to recover from this experience. Obviously this post will not be a part of Kenya's baby book we are making, but rather we wanted to inform people about what is going on and ask for your help.
This past Saturday night, Kenya began having seizures during the night. We suspected she was having seizures before this but we were not sure. We went into the ER Saturday night in Santiago but waited for 10 hours without seeing a doctor and they wouldn't take us seriously, saying that she was just making "facial gestures" and refusing to check her. So we left Santiago and went to Santo Domingo, the capital, where Dave's brother Tim and his family live and they have been helping us find people to see Kenya. On Monday she saw a ped. neurologist, general neur., and pediatrician, who all confirmed that she was having seizures and said they believe it was from the trauma during birth. We ordered some tests to get done the next day and the neur. asked us to stay up during the night tracking and timing her seizures. She had 2 seizures in a row Monday night that lasted more than 20 minutes each and the neur. said this was a medical emergency and to get her into the ER in Santo Domingo. They put her in the NICU for the next 34 hours which made those the worst 34 hours of our lives (if you can imagine what it's like to leave your baby in a NICU already, try to imagine the hell of leaving your baby in an NICU in a developing country). They put her on 5 medications which left her as a completely different baby, all drugged up, extremely sedated and unhappy. This has been killing us to see her like this. Kenya went through a bunch of tests including cranial ultrasound, cranial MRI, an EEG, blood tests, hypoglicemia, etc. on Tuesday and Wednesday. We also had a test sent to the states to test for metabolic and congenital causes of epilepsy and are waiting for those results.
The tests from the MRI and EEG came back to confirm she has generalized secondary neonatal seizures. They believe this is related to the trauma that occurred during birth. Finally they released her from the NICU and sent her home on Keppra anti-seizure medication and told us she would need to take this med for a minimum of the next 5 years. They make her extremely sedated and unhappy, and she has no muscle tone. We are checking all the time just to make sure she is still breathing. It breaks our heart because we feel like she is like an entirely different baby. She also continued to have seizures even with this medication. We called the doctor last night and she doubled her dose of this med last night. So even though the med. is not recommended for infants under 1 month, and a baby of her weight should be taking approx. 40 milligrams a day, Kenya is taking 200 milligrams a day - 5 times the recommended dose for her weight. We were told not to worry about the side effects right now of what this is doing to her, but just try to get the seizures under control because the seizures are what is most dangerous to her right now. But the worst part is that even on all this medication, she is continuing to have seizures and had them throughout last night and this morning. We don't know what to do.
Dave and I have been praying and praying and praying for Baby Kenya. We don't know what else to do at this point to help her. We have never been so scared or discouraged in our lives. We keep praying that at some point we will wake up and realize this was all a bad dream.
We are trying to declare medical emergency so we can speed up her passport and somehow get her to the states. We don't have health insurance for her in the states so we are trying to find hospitals that offer free children's healthcare. We have been recommended Shriner's Children's Hospital in Memphis, Tennessee but would love to hear more ideas and suggestions from anyone who has them. We are afraid applying to get on Medicaid would take too long.
We are seeking advice and suggestions from anyone who knows anything about epilepsy in children and what we can do. Dave and I are staying up around the clock to monitor, time, and record her seizures but we have a lot of questions about whether we are doing this correctly. If you know about seizures and are able to help us with this, please let us know. If you have contacts with any ped. neurologists in the states we can talk to, we would be thankful to have a contact like this.
We are not seeking your sympathy with this situation but rather just ask for tons of prayer for Kenya and for our family. Dave and I are really run down and struggling. I had severe damage from the implications of the birth and it has gotten a lot worse and infected as I have been pushing myself this last week to help Kenya. I will probably need to get surgery to repair this sometime in the future. Dave is sick with what may be some kind of parasite and is really run down. Thankfully we are staying with his brother Tim and his family who live in the capital and they are taking good care of all of us. For the time being, we are going to stay here in the capital where Kenya has access to better medical care and we do not know when we will return to Jarabacoa at this time.
Please understand that we do not have time to respond to personal emails and phone calls at this time, unless they are medically related. We need to put all our time right now into helping Kenya get her seizures under control and getting her the best healthcare possible.
Also, if you feel led to make a financial donation to help with Kenya's medical expenses, please let us know. We have already maxed out all of her health insurance that is covered under my insurance plan, and need to get her on a new plan for the rest of her time here. In the meantime, medical expenses are coming out of pocket and neither of us are able to work at this time. If you feel led to help us out with these expenses, please let us know.
Thank you for your prayers and help. We are grateful to know we have so much support in our friends and family in all different places around the world, and that we have your love and prayers. Please continue to pray for Baby Kenya.
Love,
Dave, Kristin, and Baby Kenya
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