Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Gabriel Kristopher UPDATE: 9-30-04 I know some of you may be thinking "another Hobt update", but I feel like to most of you this is our only means of communication and contact. We are doing well. Kris is still waiting to get back into Flight school, not really sure what's taking so long but he's definitely ready to get back into the groove again. Alex is playing soccer and staying very busy. We have games twice a week and practice once a week, that poor kid is so tired by the end of the week. We'll be having a party for Alex on October 9th, wish you all could come! Last week in church our little Kaden was "Dedicated", I felt so proud. We figure that Alex is getting old enough within a few years she'll be able to make her own decision about "asking the Lord into her life" and she'll understand what it means. I am also doing well, I've been keeping busy with my online support groups and started crafting again. Last week I got 2 wisdom teeth removed and 2 fillings and boy, did that hurt! This last week I've been in extreme pain so I called the dentist today and I also have a "dry socket", very painful, so tomorrow I get to go back to the dentist and get the other 2 wisdom teeth removed and hopefully that dry socket fixed. A couple of weeks ago Kris and I visited with our Obstetrician about having another baby. He was very supportive and thought we were in good spirits mentally and physically he thought my body was ready. We talked about if I do get pregnant while here in Alabama that I would be put on high-risk and I would be carefully monitored mainly for our encouragement during the pregnancy. I've done some further research on Ohtahara Syndrome (Gabriel's disease) and it's not a genetic disease. The chances of us having another child with Ohtahara Syndrome are very unlikely. I think the percentage is 2% and that's merely for any families who have had any form of epilepsy in their family history. Kris and I are still praying about it but are ready to move on and add another blessing to our family. We ask that you keep our family in your prayers. Below are some recent pictures, hope you enjoy them. God Bless, Love, The Hobt Family, Kris, Sarah, Alex, Kaden & Gabriel UPDATE: 8-6-04 Hello Everyone- Gabriel's website is almost finished! I would love for you all to take a moment and check it out! My dear friend Paige Green has spent several hours putting it together. There are a few songs that have not been added and a few links that need to be added, but it's almost complete!! I love it and I'm so excited!! The Web Address is: Gabriel's New Memorial Site UPDATE: 8-04-04 Hello All- Just a quick update. Kris is still waiting to get back into flight school. Although he is getting very bored the time off has been wonderful, we've been able to spend so much quality time together, especially with the kids. Alex starts Kindergarten this Friday. She's so excited. This girl is smart, recently she's been doing 1st grade math and she's been working hard on her reading. We're so proud of her. Kaden will turn 2 September 11th, and boy you can tell. He's a busy body, always getting into something. He's definitely ALL BOY! (Sometimes, I'm not sure what to do with him) There's also been a new addition to our family. We got another dachshund puppy (wiener dog). Her name is "Angel" and she's adorable. Cody loves her (our other dachshund). Once they are old enough we are going to breed them, I'm very excited!! I've been doing good. I had lots of fun when my sister was in town and I've also been very involved at church. Last weekend I went to a "Women of Faith" conference in Atlanta, that was awesome, very spiritual and uplifting. Also, Sunday was my first day of teaching in the "Children's Church" and it was a success! Today, I had a meeting with Chaplain Thrasher and I accepted Christ into my life and was Saved and tomorrow I'm getting Baptized. I'm so excited!! I know that Gabriel had a mission and I believe this is part of it! We are planning a couple of trips. On the 17th of August we are driving to Fort Campbell, Kentucky to visit The Miller's, Roth's, and Arrowoods, (our dear friends that have left us ) Then on August 21st or 22nd we are driving to Iowa for a week or so. We can't wait to see everyone. We miss you guys already!! Hope everyone is doing well. We love you all and God Bless. The Hobt Family Kris, Sarah, Alex, Kaden and Angel baby Gabriel UPDATE: 6-29-04 Hello- We're doing okay, we have our days but for the most part we're staying very busy. I feel like the kids are finally getting back to normal. Kaden is finally sleeping in his own bed and through the night again, so that's great!! Alex is good of course, swimming in our pool almost everyday. Kris has been studying a lot and hoping to get into school within the next couple of weeks. We are ready to move on and to the next stage of our lives. We're hoping to go to Fort Campbell, Kentucky with all of our friends, we won't find out for a while if we'll get to go, so please pray for us. Kris has also been ushering at church and I've started a women's weekly church group. PWOC (Protestant Women of the Chapel) and I really enjoy the activities and the ladies. Megan is coming down for a couple of weeks to hang out and I'm so excited, I'm sure she'll keep me busy. I'm doing okay, I guess I'm getting through day by day. I miss my little Gabriel so much. We just wanted to let everyone know we're okay. Death is hard to deal with and most people don't know what to say and don't say anything because it's so uncomfortable but honestly it's almost therapeutic for me to talk about Gabriel, so please don't be afraid to call or email. We've tried to stay busy so I haven't emailed or called a lot, but know that we thank everyone for all of your support and love in the last few months. We are so blessed to have such great family and friends. Below are a couple recent pictures of the kids. Thank you again for all of your continual prayers and support. We love you. God Bless, Kris & Sarah Hobt & Family UPDATE: 6-13-04 Hello, We made it home from Iowa, we're all exhausted. Poor Kaden didn't sleep well at all. We just wanted to thank everyone who was able to come to Gabriel's funeral and viewing. It was so beautiful. We also thank everyone for all the cards, flowers, donations, calls, emails, prayers etc..... Your support is greatly appreciated at this time. We are having a memorial service here at The Wings Chapel on Tuesday the 15th. Today was definitely hard coming back to Fort Rucker, I feel kind of lost. I think only time will heal my broken heart! Well thanks again and please continue to pray for us. Love always, Sarah & Kris Hobt UPDATE: 6-4-04 From Kris and Sarah: Friends & Family- Today Gabriel has gone to heaven! Last night he stopped breathing and Kris was so courageous and did CPR on him until the medics arrived. Once they arrived they took him to the hospital near by. His lungs had collapsed and he just couldn't fight anymore. Our Hospice nurses made arrangements for an ambulance to bring us home this afternoon. We went directly to the park and sat under a big tree we had our friends and chaplain waiting for us. We sat and enjoyed the nice sunny warm day and my little angel went to heaven! A few minutes after Gabriel had passed there was a gust of wind and I just knew Gabriel was fine. We made it to the park! It was so important for Kris and I to do that! We are heading to Iowa in the next day or two for the funeral. The funeral will be at Hamilton's South, on SW 9th. We'll let you know the date and time. It's been a long day and we thank you for praying and we know that God has answered our prayers and our little baby is no longer suffering. Love always, Kris & Sarah Hobt It is with great sadness and rejoicing that I post this. I just got word that Gabriel went to be with Jesus today. Please keep Kris and Sarah in your prayers during this time of loss....Elizabeth UPDATE: 6-3-04 Hello- Gabriel is home. The car ride home was a little shaky, he turned a light shade of blue on me a few times and threw up. Tonight he is resting good though. Can't wait to go to the park tomorrow, and hoping to be in church on Sunday. Alex & Kaden made it to Iowa, they are having a blast! Kris and I don't know what to do with ourselves without all the commotion around the house! (SLEEP sounds like a good idea!) Thanks for your prayers as always! Love, Kris & Sarah UPDATE: 5-31-04 Here are some pictures they we took a week ago when Gabriel was home. I cherish these moments so much. I hope to have many more of these special memories!! There is one of Gabriel holding my hand, and I just love it. He is the sweetest baby ever. It's funny how the little things are so special these days!! UPDATE: 5-30-04 Hello, I don't know if I've ever experienced something so traumatic as what I did yesterday!! I was suctioning Gabriel down his nose with a nasal catheter and his vegal response was in full effect. Basically there is a nerve called the vegal nerve and his is very sensitive and if it gets touched or bothered he closes up his throat and stops breathing! He coded and turned the darkest shade of blue that I have ever seen. I was alone and was in a panic!! I immediately turned up his O2 and pushed the "nurse" button, but it just wasn't fast enough. I ran out into the hall and YELLED "HELP", the nurses came running and then about 15-20 doctor's and nurses were there taking over. They called the CODE over the intercom and it was hectic after that. He was bagged for about 5-7 minutes, (they think) they did not need to do chest compressions so that was good!! He came back pretty quick but thought they were going to have to put him on the vent, because he wasn't breathing right. After a while his breathing stabilized and he didn't need to be put on the vent and I truly think it was in God's hands that he didn't have to be put on the vent. Praise Jesus!! The doctor's told me if he was ever put on the ventilator that he probably wouldn't ever come off! He was taken down to the PICU (Pediatric Intensive Care Unit) for the night to be monitored carefully and he is doing better today. They have moved him back up into his room and Kris is with him. My dad is in town and my kids are going to Iowa in a few days so I felt I needed to come home for a couple of days with them. Kris will take good care of Gabe, sleeping with one eye open of course!! Please continue to pray that our Gabriel will make it home in a couple of days. Our Gabriel is so fragile and he does something new everyday. We are just taking his precious life day by day! I'm exhausted, so I must rest. Thank you again for all of your prayers and concerns. Love always, Sarah I talked with Sarah today. She said they had a scare yesterday with Gabriel. She was suctioning him and he coded. They were able to get him back by bagging him and he spent the night in PICU. He is better today and is on 2ltrs. of oxygen. They were very thankful that he didn't have to go on the vent as they have been told he would not be able to come off of it in his fragile condition. They expect to go home on Tuesday. Otherwise, not much has changed. Please press in for his healing and strength and encouragement for his family...Thank you for all the prayers...Elizabeth UPDATE: 5-28-04 Hello, Well we're still here in Birmingham. They've moved us to a room and unfortunately we can't leave the room. I have to say this second experience at this hospital has been difficult. Unfortunately we couldn't go back to the NICU, and we absolutely loved it there. We formed such a bond with the doc's and nurses it's so hard to change. The doctor's and nurses that are following him now do not KNOW him and it's very difficult to work with them and make sure our little Gabe's best interest is met. We're fighting though, Gabriel is such a little fighter. It seems like almost everyday he throws us a curve ball just to keep us on our feet. Today his heart rate went down to 80 and his O2 also went down to about 70's, it was very scary. Yesterday he had a temp of 101.7, so they did x-ray, blood work up, etc.... and nothing, no infection. They continue to think he has a little virus. Chaplain Thrasher and few others from our church joined us the other day and we had a prayer vigil going and did an anointment, it was very uplifting. Thank you!! The power of prayer is amazing! Kris is heading back to Fort Rucker today and I will be here by myself for a while, so not sure when I'll be able to check email for a few days, but thank you for all of your prayers, emails and concerns. I will looking through the bible the other night and found this story. I felt it really touched home, if you get a chance check it out. Mark 9: 14-29 - It's great! My room number up here is 205-212-7690, give me a call if you would like to visit. P.S. Alex and Kaden are coming to Iowa next week for 2 weeks, they will be at my moms the majority of the time, if you Iowan's would like to see them. Love always, Sarah UPDATE: 6-3-04 Hello- Gabriel is home. The car ride home was a little shaky, he turned a light shade of blue on me a few times and threw up. Tonight he is resting good though. Can't wait to go to the park tomorrow, and hoping to be in church on Sunday. Alex & Kaden made it to Iowa, they are having a blast! Kris and I don't know what to do with ourselves without all the commotion around the house! (SLEEP sounds like a good idea!) Thanks for your prayers as always! Love, Kris & Sarah UPDATE: 5-25-04 Hello- Praise the Lord, now they are telling us it's not pneumonia, but it's atelectisis (colapsed lung). Last night they told me he may have to go on the ventilator and never come off, and today they're telling me he's fine, no pneumonia and they're stopping his antibiotics and we'll be moving to a room tomorrow. Talk about a rollercoaster ride of emotions. I honestly feel like our Faith and continual prayers have played a big part in why his x-rays went from pneumonia- something that takes weeks to recover to a collapsed lung where he is already recovering rapidly. We are still on a high level of Oxygen but they think it's because of the last few days and he was really working hard to breath. Hopefully in the next few days his level of oxygen will go down and we'll go home again soon. We're not completely out of the woods yet, but things are looking so much better. We ask that you continue to pray for him. Thank you for all of your support and love. Love always, Kris & Sarah UPDATE: 5-23-04 Hello All: Last night and this morning Gabe had a cough that he couldn't get over. We took him to the doctor this morning, and they went ahead and admitted him. They ran a bunch of tests and did a chest X-ray. The chest X-ray reveled that Gabe has pneumonia. They are giving him some antibiotics and are going to watch him closely for the next 48 hours (poor little guy). I believe he will be O.K., but we are sorry to say that Gabe's dedication will have to wait for another Sunday. Sarah and Gabe are a little closer this time, they are staying at Flowers Hospital in Dothan room 230. Please continue to pray for Gabe. This fight is far from over, we have only just begun!! Love, Kris & Sarah CURRENT: Hello- It's been a long couple of days but the docs here in Dothan felt Gabriel would do better in Birmingham. He's a little fighter, he's so tired and weak. I feel so bad for him. He has so much fluid in his lungs, he trying so hard to breath and cough it out. It's so hard to see my baby like this. We are really needing lots of prayers. I'm so worried what the future has for our little guy, I feel like this could be bad for him. Currently he is on his way to Birmingham in the jet. They thought he may have to be put on a vent to help him breath. This is the most worried I've ever been with him. Please pray, pray so hard!! Kris is staying here with the kids and I'm heading to Birmingham right now. Thank you for your support and love. God Bless, Sarah UPDATE: 5-20-04 Hello- Things are going well here at home. Yesterday we had a little scare, Gabriel was having some very hard seizures, he wasn't breathing well and his heart rate was very high. I called the Pediatrician and his Phenobarbital level had dropped to 36.1, his normal rage is 50-60 so I assume that's what was going on with him. I was able to give him an extra dose and he's doing much better today. We've found out he loves it cold in the house with very little clothes on, and he loves his room. It's very cool, quiet and isolated. He likes to have his own down time, as any new baby needs to rest often. We've had many visitors and calls, we appreciate it greatly. Keep us in your prayers. Love, Sarah UPDATE: 5-17-04 Hello- Today around 5 p.m. we made it home. Gabriel is doing well. Kris had a bunch of our friends over to welcome us home, it was great!! The ride home was good, at first he had a couple of hard seizures but he's doing a lot better. I have so many emails to reply to once I get settled, please don't think I've forgotten about all of you! Here's a picture of our little family. Finally, ALL of us together! Thank you again for all your prayers and concerns. We are so blessed to have our little Gabriel home! Love, The Hobt Family Kris, Sarah, Alex, Kaden & Gabriel!!! UPDATE: 5-13-04 Hello, Yesterday Gabe went to his own room. It's great, I love being able to be with him all of the time, even during the night. His alarms didn't go off too much and Kris and I took turns getting up to feed him, so it worked out well. Our direct line in the room is (205) 212 7691, if you'd like to call and visit, we're just hanging out. Yesterday we also found out the my Grandmother (Big Mama) has leukemia. Please pray for her and our family. Thank you very much. Love always, Sarah UPDATE: 5-11-04 Hello, Not a lot has really changed with my little Angel. We are talking about bringing him home either next Monday or Tuesday, I'm so excited. A friend of ours, Ty Miller and his flight school class came over yesterday and cleaned my house, mowed my lawn and completely put Gabriel's room together. There were about 9 guys cleaning- it was priceless!! (Thanks Ty!!) My mom and Aunt Donna will be driving from Iowa to help me for a week and then my Dad and his girlfriend, Danette are coming the week after to help. I can't thank you all enough for coming such a long way to help us!!! Everyone has been so supportive, meals, emails, prayers, taking care of Alex and Kaden when we have to be away, it's something we'll never forget! Gabe's sodium has been good the past 4-5 days, which is excellent. He seems to be doing about the same. I just can't wait until he comes home. Please continue to pray for our family. Thank you all!! We love you Kris & Sarah UPDATE: 5-6-04 Hello- Well today we met with Gabe's Neonatologist. We are going to bring Gabriel home in about 2 weeks. Kris and I are so exstatic. The doctor's have decided that because of the episode last week with surgery that Gabriel shouldn't try to have surgery again because it's too risky. He is going to come home with a tube down his nose into his stomach for feeding, NG tube. Kris and I will learn how to put the tube in and change it and give him his medicine and food through the tube. It's also a possibility in 6 months or so if Gabriel is more stable they will try surgery again for the G-tube. The devastating part of all of this is the doctor doesn't predict that Gabriel will live long. They couldn't give us a time, but they don't see him improving. I personally don't see him improving but I don't see him getting any worse either. I'm not sure what will happen with my little guy! Just keep praying that he will get better. Kris and I are going to bring him home and love him and enjoy the time we have with him and know that God will get us through what ever the future holds for Gabriel and our family. We would appreciate it if you would continue to pray for us and support us during this trying time. We're going to make the best of it. I can't wait to take Gabe to the park and push him in the stoller. I want to have him dedicated at church as soon as we can! Thank you again for all you've done and continue to do. We can express how much we appreciate it. Love, Kris & Sarah UPDATE: 5-4-04 Gabriel is doing well today. His sodium was low again this morning but has went up some this evening. Today in rounds the doctor said once his sodium is back up they will talk to surgery to see if and or when they will try the surgery again. Attached are some recent pictures, I was giving Gabriel a bath. Alex also lost her first tooth, she's so proud!! Thank you for your ongoing prayers and support. We love you. The Hobt Family UPDATE: 4-30-04 Hello- Well Gabriel is stable now. His heart rate is back to normal and his temperature is dropping. They think he had a reaction to one of the meds they were giving to put him to sleep. That was very scary!! When the doctor's look worried, then you know something's wrong. They did an EKG and it was normal. He has started to breath on his own, but is still on the vent. Hopefully next week we can try the surgery again? We'll see. Thank you so much all of your prayers and concerns. We definitely need prayer after prayer. I feel like it's one bad thing after another! Thank you again and sorry for so many emails today!! Sarah Just a quick up date, Sarah just called and said that the surgeons had to stop the surgury. Gabe's heart kept going up and down. They have called in a cardiologist to look at him. Thus far, they have completed the muscle biopsy, nerve biopsy and the cerk.. But, they still have yet to do the fundo. or the stomach tube. Sarah is very scared and nervous His heart rate seems to be on the high side, ranging from 215 - 240, they think he is having a siesure. " I just want to tell him to calm down, and that it will be O.K.!!" God, give gabe the strength and the doctors the knowledge to ensure a safe and successful recovery from all this!!! Luckily, my mother is up at the hospital with Sarah and is there for her and Gabe. Thank you all for everything you all have done!!! I will continue to keep you informed. Kris and Sarah Hello, As of 10:00 AM Gabe has went to surgury and it be about 2-3 hours before he is done. Sarah will updating me as time goes by. We will send an E-mail out after he back from recovery. Please, keep praying for him! Thank you Kris and Sarah UPDATE: 4-29-04 Hello all- Gabriel is scheduled for surgery Friday. Today his sodium is 128, so hopefully it doesn't go down too much tomorrow. We'll just have to wait and see. Yesterday I came home for the day and I will head back to Birmingham today. The nurses said Gabe did pretty good in the night. They started him on another anti-seizure drug called Klonipin. Hopefully this one will work. Chaplain Thrasher from our church came to Birmingham to visit yesterday and it really lifted my spirits. Thank you! Please continue to pray for little Gabe. I pray he makes it to surgery tomorrow and hopefully will be home soon. The Neonatologist spoke to me a few days ago and said after surgery Gabriel should be home in about a month. I can't wait!!! Attached are some recent pictures. Take Care, Sarah UPDATE: 4-26-04 Hello, Gabriel is doing okay today. His weight was up the last few days, which is very good. He weighs 8lb. 1oz. still pretty little, but they do not feed him very much as they think it's effecting his sodium level. Yesterday Tracy came to visit for the day. It was great, it was nice to have someone else here with me. Sodium today is 119, needs to be around 128 to do surgery. I don't foresee surgery any time soon, maybe by the end of the week. I wish they could figure out what's causing his sodium level to be so abnormal. His fever is gone though, so that's also encouraging. I just want his surgery to come soon, so he can recover and come home. He has started a new little seizure which is different from the others, he will have a normal seizure then afterwards he will blink his eyes and then his legs start jerking. It's very hard to watch. Please continue to pray for our family. I'm starting to feel very tired, depressed, sad, etc. etc... I just want him to get better and come home. I miss my husband and my other children!!! (I'm sorry, I feel like have a little pity party for Sarah). Thank you for all you've done for our family, we greatly appreciate everything. Love, Sarah UPDATE: 4-22-04 Hello All, Well today Gabe was scheduled for surgery again at 9:00 a.m. and he had a fever. Poor little guy has had a rough couple of days. So they are giving him antibiotics and testing his blood for infection and they will try to perform the surgery next week. Then tonight I had quite a big scare. He was having a seizure and I looked up and his heart rate was 21, yes that's right 21, then his Oxygen stats dropped to around 68, boy was I shook up (tears and all). I was thankful that the Nurse Practitioner was close by and bumped up his oxygen and he then came right back up. He has never had a seizure that bad before!! So they gave him an extra dose of Phenobarb and hopefully that doesn't happen again. They did say that it could've been because of his fever. He did have a fever of 99.9. Please Please keep praying for us, I pray little Gabe's fever will go away and he will be able to have his surgery next week and eventually come home to his family. God Bless, Sarah UPDATE: 4-20-04 Hello, Gabe was supposed to have his surgery today, but his sodium level was too low. It needs to be around 128 for surgery and it was 124. They are going to try for tomorrow. Last night he sucked on his pacifier for about a half an hour. I love it! Please keep praying for us. Thank you and God Bless. Love, Sarah UPDATE: 4-19-04 Hello, Just a quick little update. Gabe is doing well today. Kris and I are heading back to Birmingham today for his surgery tomorrow. Gabe's sodium is low again 122- it should be around 133 or 135. So hopefully it will be okay for the surgery tomorrow. I was checking out our website and there isn't any pictures with Kris and Gabe so I thought I'd add some. Thank you and I ask that you keep praying for our family and little Gabriel. I pray that he will grow strong and the seizures will stop. I also pray that he does not need a trach. God Bless All, Kris & Sarah UPDATE: 4-18-04 Hello, Gabriel is pretty much the same today. His Phenobarb level was very high today, 66. That's the highest it's ever been, so they held his morning dose and only gave him his evening dose. He was surprisingly alert today. He reached up and sucked on his hand, it was great! Unfortunately I missed it, aunt Johnna and our favorite nurse Christi witnessed it (so it really did happen-it's hard to believe sometimes). To all of you medical buffs out there, if anyone knows anything about the OHTAHARA SYNDROME please email some info. we have been looking on the internet but there's not too much info, I would really like to talk to someone who's child has been diagnosed with that syndrome, possibly someone from the children of the promise website. Thank you for all the prayers and support. We love you all. Love, Kris & Sarah UPDATE: 4-17-04 Hello, We waited nearly all day for the doctor's to take Gabe to surgery and around 3:00 p.m. the surgeon came to us and rescheduled. They had some emergency surgery's to do, but they will try to perform Gabe's surgery on Tuesday. His sodium level last night was a little too low, but today he brought it up and it was perfect for surgery. We'll try again. They do not seem too concerned that we have to wait until next week, it's not really that emergent. It's amazing how just the little things can get us so excited and hopeful. Last night they stopped feeding him after midnight so today he was very hungry and I gave him his pacifier and he was sucking like a little mad man (which is excellent). The Physical Therapist also came by today and was teaching us some exercises we need to do with him daily and he was holding his own leg up. It's so encouraging when he does these things. Even though it seems so small, it's something. Kris was holding him today and Kris went to put him back into bed and he started crying, with purpose. He didn't want daddy to put him down, there were no seizures involved! But.... he's still momma's boy! :) Thank you all again for all of your prayers and concerns. We greatly appreciate everyone's ongoing support and love. Love, Kris & Sarah UPDATE: 4-15-04 Hello- Yesterday we met with the Neurologist. Unfortunately they didn't tell us anything new. They are still waiting for several tests and still are unsure of what's causing the seizures. They talked possibly about adding a different medication to the Phenobarb but at this point they are not going to. They did mention that if they can't find anything after all of the test results have come back they think he may have the OHTAHARA SYNDROME. Here is a website with more info. http://www.epilepsy.org.uk/info/ohtahara.html. Gabriel has been awake more. The last few days we've noticed him opening his eyes and looking around for more than just a few minutes. Tuesday he was awake for about 20 minutes purposefully looking around, this is what the nurse said. Kris and I also noticed him more awake the last few days. We bought him a little tape recorder and some childrens music and the nurse said she was playing it and he kept turning his head toward the music. This is definitely a small step but it's very encouraging!!! Kris and I are struggling and we are very stressed out about what is to come. We need prayers, prayers, prayers!! With all our Love, The Hobt Family UPDATE: 4-13-04 Hello- Today Gabriel is doing okay. The results for his PH Probe (reflux test) came back and it shows he's refluxing a little. They have scheduled his surgery for Friday for the G tube and they will also do the procedure to prevent him from refluxing (I'm not sure what it's called) the esophagus will be wrapped around his stomach. His Phenobarb level right now is very high, 50.4 and they gave him another loading dose today to try to stop the seizures and make him more comfortable. Today when Kris and I got to the hospital he had his eyes open for about 5-10 minutes and seemed as though he was looking around. The Neurologist is going to talk to us tomorrow morning more regarding the 24 hour EEG. The nurse practitioner said the initial findings showed that he has INFANTILE EPILEPTIC ENCEPHALOPATHY. Which means what? We're not really sure, so hopefully tomorrow they will have some answers. I know they do not have all the tests back yet, so I'm not sure how much information they will have for us. We'll keep you posted. We had a nice Easter and the kids are doing good. Thank you for all your prayers and concerns. Kris & Sarah UPDATE: 4-9-04 Hello- Gabriel is doing okay. Yesterday he had another EEG done with a recording for 24 hours. The doctor's have decreased his feeds to 55CC's to try to get a diagnosis on his sodium deficiencies. They still do not know when exactly they will do his surgery they are still waiting on some tests to come back to see if they need the muscle and nerve biopsy. The Ophthalmologist saw Gabe yesterday and his optic nerve was a little smaller than normal, but the doctor's are not too concerned with that yet. They will check it again at about 9 months of age. On Wednesday, Gabe's blood count was low enough that he needed a blood transfusion. His oxygen stats were dropping frequently, so they've put him back on some oxygen. Kris is on stand-by to give blood if needed. They do not think he will need another transfusion in the near future. I have Mastitis (breast infection) and was very sick yesterday with flu like symptoms, fever, achy body, and chills any of you ladies that have had it know it's not fun!! I'm feeling better today, but still not normal. (what's normal? haha) Thank you again for all your emails, prayers and concerns. Terry and the kids have been getting some really great meals at home, it is much appreciated. Happy Easter, Love, Kris & Sarah Hobt UPDATE: 4-4-04 Hello- Gabriel is doing okay today, he is the sweetest baby. He's my little cuddler. His Sodium level is very low and the doctor's are increasing his supplement so hopefully it will help. The surgeons do not want to give him the surgery until his Sodium level is back up, possibly by the end of the week it will be better. There's really no change at this time, we are still waiting for several tests to come back and maybe get some answers. Over the weekend the Miller's and the Roth family came to visit us in the hospital which really lifted our spirits. Alex and Kaden are also doing well. Please keep praying for our family. Love all, Kris & Sarah Hobt UPDATE: 4-3-04 Hello Gabriel has done well today. We bought him a portable swing that he can use, and he did okay with it. We also gave him a bath tonight that he seemed to enjoy. It seems like he was awake a little more tonight. (I have a feeling his Phenobarb level is going down) he also seems to be seizing harder. The CT Scan was done a few days ago came back normal (go figure- UAB told us he had bleeds or calcifications), this one didn't show either. So who knows what the UAB doctor's saw?! The Upper GI didn't show reflux. The doctor's are scheduling his surgery for the G tube (a feeding tube in his tummy) for Wednesday or Friday of next week, at that time they will also take a nerve from his ankle and a muscle biopsy for some testing, and possibly circumcise him while he's asleep for the surgery. We'll keep you posted as more of the tests come in. We're hanging in there, thank you again for all your prayers and concerns. We love you, Kris & Sarah Hobt ADDED: 4-01-04 Gabriel was born March 1, 2004 and was immediately put on Phenobarb for seizures. You will read below the previous requests and see that he is comatose due to the Phenobarb levels. If you have any experience with seizures, please email Sarah, his mother, with any information or encouragment. 3-31-04 Hello- Today Gabriel had a hearing test done and his right ear is good but the left didn't pass one of the tests, so they're not sure if he can hear out of his left ear. They also did another CT scan today and Upper GI to see if he's refluxing his food. We don't have the results back yet but hopefully tomorrow. Sarah 3-30-04 Today we spoke to the Neurologist. Unfortunately he didn't have a diagnosis for us as to why Gabriel continues to have the seizures. He was very open and honest with us and thinks that Gabriel's condition will most likely not improve. He does not know his final prognosis, but he thinks his outcome is going to be very poor. (You know doctor's, they beat around the bush) I don't think he can say exactly what Gabe's outcome will be until there is a diagnosis and it's been a few more months. I did ask the doctor if he thought Gabriel would be a "vegetable" and he couldn't answer me. They are going to start running some more tests that will be sent to Dallas. They are going to raise his Phenobarb level to hopefully get the seizures under control. He is also going to talk to some of the other neurologist for their opinions as Gabe's condition is very rare! Kris and I are not ready to give up yet. We hope and pray that he'll get better. Please continue to pray for Gabriel and our family. Kris and I are struggling with all of this and we need the strength to get through it all!! We love you all and thank you for all of your support. Kris & Sarah 3-26-04 Today we got the results back from the MRI. They say the MRI looks normal, so basically it's stating that there's no brain damage. However, the EEG confirmed that he is having seizures when he has these weird movements, but there's no visible damage to his brain. They are no longer calling this HIE, but are searching for reason's why he is continuing to have these seizures. They think this is something that he was doing while in utero. He is on Phenobarb to help the seizures and his level is fairly high, but still continues to seize every 3-5 minutes. The good thing is his oxygen and heart rate are staying normal when he is having these seizures. They are going to start running some additional rare tests to try to confirm why he's having the seizures. They are concerned that they may not find a reason and don't know what his long term outcome will be. Right now he is in a Phenobarb coma. The only time he opens his eyes or cries is when he's having a seizure. Today they are doing a spinal tap and checking his B6 then will start feeding again and we'll see what happens. This is such a rollercoaster of emotions. So we're not really sure what to think but it's encouraging that they say no brain damage. Thank you again for all your emails, and prayers. We've had so many people reaching out to us, it's amazing. We appreciate everything so much. Thanks again, Kris & Sarah 3-25-04 Gabriel has been moved to "Children's Hospital". Yesterday they did an EEG (this will be his 3rd) and today they will be doing an MRI. They tried the MRI last night, but he wouldn't stay still, so today they will have to sedate him. He hasn't had anymore of those nasty episodes when he stops breathing but his PHENOBARB level is very high right now. Normal or theraputic is 15-40 and his level yesterday was 50.2. The doctor's don't seem to concerned with that level though! My mom and the gang are here so that is helping a lot, at least for me it is. Thank you again for all your prayers. We just ask that you keep praying. 3-18-04 Yesterday we had a little set back. Gabriel was doing well and in the nursery on the CCN floor, still on room air and not requiring oxygen. Unfortunately he had an episode later in the afternoon when his breathing stopped causing his heart rate to go down and they had to do CPR on him and had to bag him for approximately 6 minutes. So now he is back up on the NICU floor and being watched very closely. They are not sure why that happened, possibly a seizure, or a Vaso Vegal Response (in a nut shell- he was having a bowel movement and for some reason it caused his heart rate to drop) or possibly an infection. The doctor's do not know what is going on. (I know- how reassuring) They are still trying to run tests and do research. They are also going to do chromosomes testing and see if they can find some answers! They do not think he will be leaving at the expected 2 week time and unfortunately don't have a time frame as to when he will go home. He is still on room air and only requiring oxygen blows occassionally, which is good. His stats have also been good today. Thank you again for all your prayers, emails, phone calls, gifts. We are so blessed to have all of you in our lives. P.S. Kaden and Alex are doing well, they came up to the hospital earlier this week and Alex loves her new little brother. We've nick named him BABY BUBBA!! 3-13-04 Well Gabriel is officially off oxygen, which is great. He has been making some different movements the last couple of days and unfortunately the doctor's are not sure what they are? Yesterday he had another EEG to see if maybe they are seizures or just part of the brain damage, so hopefully we will get the results back sometime Monday. He is still struggling with his feedings drinking from the bottle, but is getting better. He knows how to suck, he just hasn't figured out how to suck, swallow and breath all at the same time. He did however move downstairs to the other nursery which means he's getting better. He is also in a normal nursery crib instead of a bubble. Thank you for all of your emails, we've been so busy I haven't been able to respond to all of them but we do appreciate them. Please keep us in your prayers. God Bless, Kris & Sarah