Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Hannah Grace Current Page One UPDATE: 8-23-10 I took Hannah to an orthopedics appt today, hadn't been in two years...her spinal curve went from 41 degrees (moveable) to 75 degrees (not moveable) today! I guess I wasn't surprised when we had to talk about spinal fusion surgery! was just hoping that day wouldn't come :( We have decided it needs to be done so please pray for the timing to be right. Jenn 's baby is due the end of Oct and Becky's baby is due the end of Jan. He said they are scheduling into Oct and Nov now. this will mean 2 weeks in the hospital, 1 week in intensive care and 1 week in rehab. thanks joan UPDATE: 4-4-10 apr 1 Today hannah has been having a lot of the same seizure she was in the hospital for during the snow. Neuro was having issues with their phones so I finally got in touch with her peds office and they are going to do bloodwork on her in the morning. If they get worse I am going to take her to dupont instead. They aren't as bad as they were then. apr 2 taking Hannah to dupont instead of the ped. Her nurse is staying with taylor til becky can get off work...chuck is working from home anyway... UPDATE: 3-28-10 Last week hannah had a few episodes that seemed like seizures to me but I had never seen them before...I took a video of them and will show the dr the next time we see him. We have still been without a lot of nursing lately. Our friday and sunday nurse's mom was having a lot of trouble and she passed away...the nurse will be back this weekend. but we still have saturday nights open..thankfully we have a nurse filling in right now, but it's starting to get to be a lot for her, she comes from salisbury...if anyone knows a nurse looking for some extra money, let me know... I have been taking the girls for a walk, but the double stroller I have been using is not working...it's very old and hannah's knees are bruised from it...so now, I need to find a newer one or figure a way to hook the stroller and wheelchair together, any suggestions? Her secretions have been a lot thicker than usual, again :) lots of suctioning yesterday...I hope she is not getting sick...I think it's from the weather changing... UPDATE: 2-19-10 saturday afternoon the nurse came by that normally works fridays..she wsas on her way home from a case that she got snowbound at on wed! the agency knew that or at least one person did...she had tried to come home and her car broke down and when AAA picked up her car, her phone fell into the car and she didn't have a phone to get our calls or texts..she was upset that we didn't have a nurse that night..she had stopped by to ask me something about H's meds and when we asked how she was she was shocked..then we told her the story.. Hannah is pretty much back to her "normal" seizures. She is coughing alot so I hope she didn't pick something up from her 24 hospital stay...she is just sleeping more than usual from the phenobarb increase. UPDATE: 2-13-10 the seizures continued to get worse and thurs afternoon we finally took her to the ER at dupont...the only thing they found was her phenobarb level was low so they gave her IV phenobarb...they wanted to observe her and it was getting late so we finally decided to be admitted..we got home late tonight, 9pm and no nurse! very frustrating and we are getting different stories from the agency...the nurse is not answering her phone, chuck left her a lot of messages...we just don't understand this and are very tired...he was so upset he didn't go to bed til late and is still not sleeping good..I am tired but trying to let him sleep a while and then we will switch...our other nurse is going to try to come by in the morning after her 11 -7 shift on another case and work a couple hours.. She is very sleepy but the seizures are back to "normal" for her..we are increasing her phenobarb to 3 times a day instead of 2. thanks for the prayers... UPDATE: 2-10-10 Hannah is having a lot more seizues than usual...almost seems constant...we are in the middle of a blizzard!!! please pray...no nurse tonight and we live over 2 hours from the hospital! UPDATE: 8-3-09 Hannah has been doing pretty good lately except for her seizures…for the last couple days she has been coughing a lot more than usual though…I just checked and her temp is 99, and her secretions are a little thicker…normally I wouldn't be worried but I am leaving in the morning to fly to FL to take my mom to visit my sister….hannah's nurse is going to be here with her during the day, thank you patti! So, please pray that she isn't getting sick right now and for us to not worry :) I know she is in good hands but you know how that mommy feeling is…chuck will be alone with her a lot tomorrow (Sunday) afternoon and he doesn't take care of her very often without me. I will be home late Friday night. A new concern is dental…MD medical assistance has changed their dental program and it looks like dupont is not accepting it now. I think it's important for her to have her dental work done there since that is where all her other drs are and if they need to pull teeth they can do it there. She has an appt on the 19th so pray that we can find a way to have her appt there. Our nursing is better right now but our newest nurse is working the extra hours that we have and I am not sure she wants to do all of that permanently so please pray they can find a permanent replacement…thanks joan UPDATE: 7-15-09 Hannah is now 14 years old...she has more than passed her life expectancy that was given when she was born...the Lord is the one who has gotten her where she is now..hard to believe my baby is 14yo but she is still my easiest teen! Our friend Peggy painted her room for her birthday..its a really nice bright green color..we also put a new front door on the house on her bd...we were able to take down the storm door so now we only have 1 door with her wheelchair so that makes it better for her and for me! Chuck and I finally got a chance to get away overnight this past weekend...it was nice to get out of our normal routine even though it really wasn't long enough :) We stopped the new seizure med, I didn't like the way it made hannah with the side effects...she was hyper all the time, constantly moving and not sleeping during the day...that is still not back to normal but she just had her last dose saturday night. Her seizures are about the same...this week we do have nursing coverage every night, Praise the Lord \o/ we do have a new nurse for friday nights..she seems to fit in well... It looks like we may have to find another nurse, Alice got hurt at another case and is in a lot of pain...she has too see her dr tomorrow and we think he is going to put her on disability. For the next 2 weeks she is only here 1 day but starting Aug 1 she is supposed to do 3 days a week here...so pray that they will be able to find a replacement if that happens. One of our old nurses would like to come back but she is the primary nurse on another case so the timing is not good. I read on another blog about getting paid to advertise on blogs for different products, I laughed when I read hers about medical things (thanks Holly :)I could have made a fortune in the last 14 years with all the different things we have tried and used for Hannah LOL Taylor is 10 months old now...she has been taking a few steps and can stand alone for a few minutes but when she realizes it she sits down :) It's getting hard to feed her, she breaks out when she eats any fruit but bananas and gets sick with milk products...the funny thing is her mommy never liked bananas even as a baby and still doesn't and they are taylor's favorite :) her favorite toy is her walk behind/ride on car...she pushes it sideways everywhere! she looks like a little old lady pushing her walker. I keep trying to get new pics of her but she is either moving too much or grabs for the camera. I will try to get some new pics up soon. I realize how blessed I am...thanks for praying for us.... joan UPDATE: 7-5-09 wow, didn't realize I hadn't sent an update in so long...seizure wise everyday changes with hannah...some days we don't see many and some days we see up to 12 or so....we can't find any kind of pattern and dont know if the new med is working or not...hard too tell...but she isn't sleeping hardly at all during the day...she normally sleeps at least 3-4 hours in the day...that is one side effect of the med. respiratory wise she is getting thicker secretions in her trach, but I have had a lot of congestion too so hopefully it's the weather :) Nursing is not any better...patti's last day is aug 31. we are tyring to work it out so mary and alice can do the 5 days. angel does sat.'s. the problem now is we have every friday night open. Her nurses have tried to fill in but that is getting hard. we are having some trouble with our nursing agency, please pray for that...so far, there is no nurse scheduled for this friday. our friend peggy painted Hannah's bedroom for an early bd present, it looks great! A beautiful bright green that brings out all the colors in her bedding and curtains...can't believe in 1 week, my baby is going to be 14yo! When she was born, I don't think they expected her to live her first year! It's always interesting to see how God uses her. Chuck is on a mandatory "vacation" next week, doing some things around the house...we would love to get away for the weekend but no nurse on friday night is going to make it impossible...please pray for that...we really need some couple time without being hannah's parents fora change... I am excited, my sister pam is coming on the 4th for a few days...and hopefully the first week in august I will be taking my mom to FL to visit Pam...patti is going to be here with both girls for me...and taylor is really getting to be a handful :) she is so busy and in to everything! she is 10mo now! thanks again for the continued prayers for us...it's hard watching her now but every once in a while, she lets us know she is still here :) joan UPDATE: 6-6-09 This is one of those times that I really don't know what to say in an update... We did see the nurse practioner when we got to neuro and I asked her why we never see the dr, she said it's just the "luck of the draw" So I asked to see him, she said we would have to wait a long time and I told her I would wait...I didn't think it would take long since we were taking up a room and I had my mom, taylor and my nephew josh (4yo) with us :) she had already told us about a new med that had just come out called banzal. We started that last night. she also said that they last time we were there and went for bloodwork they didn't do all the levels...I felt rude almost saying that I didn't order the bloodwork or draw it, don't know why she was acting like it was my fault, I had it done there right after her appt last time :( we did bloodwork tues again... The dr acted a little annoyed when he came in, but as we talked I think he understood whey I wanted to talk to him. I told him that we had seen a lot of regression with her in the last year or so...she rarely laughs and smiles anymore and just doesn't seem as content as she used to be. She just looks tired all the time and either sleeps a lot or just sits there in a "daze". She is having more seizures and different kinds, she has to be cathed for urine retention, etc. He said that is a progression of her syndrome, kinda like alzheimers would do to a person. I asked him why no one had ever told us that before and he said that most parents don't ask or don't want to know. I think I always knew that in the back of my mind :( and I am very realistic with things pertaining to Hannah... I had thought I was imagining things so it was a relief to talk to him about it... We have always tried to make sure Hannah was comfortable and don't want her to suffer a lot...please pray for guidance and comfort for us and especially for her...only the Lord knows what is going on with her....and He is in control \o/ Chuck and I talked about this later and he said he thinks that's why he kinda pulls away with things pertaining to her...and I can be a little obsessive, so pray for us to find a balance. I feel like I am alone most of the time with making decisions and anything with to do with taking care of hannah. I am getting burned out again...haven't had anytime away for over a year...except in the fall chuck and I went to see jenn and bob in VA but were only gone for 1 1/2 days...it's harder to get away now that I have taylor too...my dr wants me to go back to aqua therapy for my arthritis and fibromyalgia but I need someone who could watch taylor for me thos couple hours a few days a week :) I am so blessed to be able to take care of taylor but she does wear this old grami out :) she is such a blessing and a sweetheart and so much like her aunt jenn when she was a baby :) Our nursing is changing, Alice has moved but still working here for now and Patti is moving...pray that we can work out the hours with the other nurses for good coverage and hours to satisfy everyone :) Thank you for the continued prayers for us... joan UPDATE: 6-2-09 Hannah has a neurology appt in the morning…we don't usually see the dr, just the nurse..pray that we can see him and get him to understand what we see with her seizures…it's so frustrating and they make me feel like I don't know what I am talking about… Thanks joan UPDATE: 5-19-09 Pray for Hannah...took her to the dr yesterday, dr K wasn't in...the dr we saw said she had a double ear infection but we don't see anything different than usual about her ears...she did put her on an antibiotic though, good for anything...she is still running a high temp for her, it's been as high as 102! her usual is 97. she has a really bad hoarse cough and lots of upper resp junk...she hasn't been this sick in a couple years...sounds like what chuck and I are still dealing with, especially the cough...she is just not herself... joan Chuck was sick a couple weeks ago and tried to stay away from us...and then I got it last week...still have a really bad cough, think it's bronchitis...of course I still had to take care of Hannah and taylor and was very careful to wash my hands no matter what I did and tried not to cough or breathe on them :) but now, Hannah has been running a temp for a couple days (was 101.6 this morning) and has a very hoarse cough. She has not been sick for a very long time. We didn't go to church this morning, because I wouldn't want to sit near someone with a cough like mine at church :) Please pray that she gets over this quicker than we did...we didn't have a fever that I know of just a sinus infection and bad cough. Pray that taylor isn't getting it and that we don't keep spreading it to each other. I wrote this on wed but forgot to send it. Hannah saw the urologist yesterday, they were impressed that we followed directions and kept track of how much we get when we cath her...most parents don't do it but hannah has nurses that have to chart it :) we have to continue with the cathing...she retains so much after a wet diaper pray for me, I have bronchitis and feel awful, chuck had it last week...I don't want the girls to get it...and taylor has been very whiny and clingy today... she continues to have the seizures. UPDATE: 4-14-09 We had a nice Easter...Hannah seems to be the only child who knows the real meaning of Easter :) She doesn't know holidays and about toys and things so that is always nice for us...but Taylor definatly adds a lot of life to our holidays..she loves everything about life :) except teething :) Lately Hannah's seizures have changed...most of them now her foot jerks or shakes and sometimes her whole body will shake...not sure why they are changing but the neuro says sometimes this happens. She will laugh a little more if we tickle her or give her lots of kisses like we do taylor...she can fight it though and will...she is getting harder to move her around our house...last week her foot must have been out of the socket for a while..it's too easy for me to bang her feet on the doors when I even move her out of her room. She keeps her feet straight out, it's hard enough with the wheelchair itself...we were talking and there are some things that need to be improved for Hannah especially in our house and van....does anyone know how to do a fundraiser or where to look for help? thanks for the continued prayers.... joan Re Added: 9-23-04 Originally Added: 7/18/04 We lost contact. Condition: Hannah Grace, 9yo : Deletion chromosome 1 q 21-25 profoundly deaf, visually impaired, bilateral cleft lip and palate, seizures, trach (laryngotracheal separation, tracheomalacia CPAP), Gtube, Von Willebrands, Severe growth and mental retardation. Her Story: Where do I begin telling Hannah's story? We had tried for years to have a 3rd child. We had about given up thinking the Lord had given us all the children we would have. When Becky was 13yo and Jenn was 11yo, we found out we were pregnant! We were very surprised and excited…and a little scared. We had been through all that and our girls were a long time out of the baby stages. When she was born, we were 37 and 40yo, the girls were 12 and 14 and we had been married for 17 years. We just celebrated our 25th wedding anniversary. I had a pretty uneventful and wonderful pregnancy. I bled a little for the first 4-5 months. I thought I was losing her but the drs said that was normal. During my pregnancy they had only done 1 ultrasound on me. They said the baby was small so they said the date was wrong and moved my due date back almost a month. She would not give a profile during the ultrasound no matter what they tried. If they had gotten a profile of her they would have seen her large cleft lip because of the way it was shaped. Even though they didn't find anything wrong then I knew in my heart I was carrying a very special baby. I didn't tell anyone thinking it was because of my age that I felt that way. I was 37yo when she was born and most of the time you hear of older parents having children with downs and things like that. I look back and wish that I had said something to someone so we could have prayed about it. My friend Carol also felt the same way for me but was scared to say anything. Things went well after that. I had craved salads and didn't want meat or sweets so I lost 5 pounds while I was pregnant and after delivery had lost 20 pounds (sadly, I have found it all again 7 years later!) Two weeks before she was born the dr asked me how big my girls were at birth. Becky was 6 lb 13 oz and Jenn was 6 lb 11 oz. He guessed by the size of my uterus that the baby was going to be around 6 ˝ to 7 lbs. He was shocked when he delivered her and she was so small. The first thing he noticed was the very obvious cleft lip and palate. Then the small size. He thought she was about 5 lbs but was surprised that she was only 3 lb 14 oz, full term. I still say she was 2 weeks late but because of her size they said she was 3 weeks early. I felt a kind of relief when he said she had a cleft lip. She appeared to be healthy and beautiful other than that. Her APGAR scores were a 9! They whisked her away to check out any other "anomalies". They found that she also had a very deep bilateral cleft palate along with the bilateral cleft lip. She had lots of other little things like curved pinky toes, low set ears, a raised sternum and other little things I can't remember right now. Becky was in the delivery room with us and her first words were, "mom, she is beautiful" when the dr said, "it's a girl!" Jenn had left with my parents to get something to eat and my labor progressed pretty fast then so she walked in without anyone warning her and was surprised by how she looked. The protruding lip was very odd looking. I know that had to be very scary for her. They tried feeding her but she had trouble which led to her first aspirataion pneumonia. We thought it was not being able to suck because of the clefts but later we found out it was her swallowing that was the problem. She sucked a pacifier for a while without a problem. They had discharged me but let me stay there so they could watch her. It became obvious that she was having trouble breathing and that's when they found out that she had aspirated and had pneumonia. So of course, that meant a helicopter ride for Hannah. That was the hardest thing I had to do, stand outside and watch a helicopter fly away with my newborn daughter in it and not be able to go with her. She was in the NICU in Baltimore MD for 21 days. It was during that time we found out that she had a deletion on her chromosome #1. Here is a good page explaining about chromosomes. She was there until she could gain weight. She came home with a feeding tube that we had to put down her throat to feed her. When she was 3 months old she had surgery to get a permanent Gtube for her feedings and had surgery called a nissen fundoplication to correct severe reflux. She had cried and arched most of the time until she had that done. We found out that she had been in a lot of pain. We normally reflux 2o times in 24 hours but Hannah refluxed 196 times in the same period! No wonder she was miserable and we didn't know. It was silent reflux and she rarely spit up. When we brought her home from that surgery she was a new child. She rarely cried and slept better. She was such an a wonderful baby and so easy to take care of for her first year. She had her first surgery on her lip when she was 6 months old. When she was 11 months old she got her first pair of glasses (for an astigmatism) and chicken pox along with her boyfriend Stephen who was 4 yo then. He has down syndrome and tells everyone even now that she is his girlfriend. He recently (7/02) told his mom that he is going to marry Hannah when he is 21yo! A week before she turned 1yo she had her first seizure. That was scarier than her flying away in the helicopter. This started a lot of hospitalizations most from seizures or aspiration pneumonia. When she was 3yo we noticed she was having a hard time with excess secretions and couldn't swallow them right so she would turn blue for a few seconds. This happened so much, we decided to have her trached to help with that. For more information check out Aaron's Trach page She still had seizures and pneumonias but the trach made it easier to handle them. She came home from five weeks in the hospital with home nursing. She has to have 24 hour "awake care". This is because she could pull her trach out and needs suctioning and care during the night. Since she doesn't sleep all night this can be very tiring without the nurses. Because of the nursing shortage we have had many nights without coverage but in the last year we have had really great nurses and very few uncovered nights. She continued to have many aspirations and after much searching and prayer we decided to put her through surgery again in August 2001. This time it was to completely separate her upper airway from her lower airway, called a laryngotracheal separation. This was hard because it is not a reversible surgery and requires her to have a trach for the rest of her life. Even that didn't stop her copious secretions and trouble controlling them. In January 02 we found out during a routine bronchoscopy that she has very severe tracheomalacia. That is essentially a floppy or collapsing airway. We reduced some of her nebulizer treatments and put her on CPAP. That is Continuous Constant Air Pressure. Since she started on that she has a much easier time controlling her secretions. It doesn't breathe for her, just helps her lungs stay open when she breathes. This has helped her keep her lungs a lot clearer. Hannah has lots of "issues" from her deletion but she is our special angel. We know that she is a blessing from the Lord. And that prayer has been what has gotten her as far as she has come. As I write this her 7th birthday is tomorrow. When she was born I don't think anyone expected her to live this long. She is everyone's "baby" and loved by all who meet her. So many people feel sorry for her when they hear about her but when they meet her they realize that Hannah doesn't care who she is not or what she can't do. She is about 4 months in her development so that's how we treat her. She loves to roll around and kick her feet and legs, look out she has a mean kick! She can't sit alone or walk but she likes sitting in her wheelchair and standing in her stander. Hannah is profoundly deaf and doesn't appear to hear anything. We think her hearing and her vision are cortical meaning sometimes her brain just doesn't process things. She has her own sign language that is hard to describe. It's like communicating to a baby…they can't talk or anything but you can usually figure out their needs. She rarely cries and when she does, we know there is something wrong. Sometimes she laughs at things she should cry at so I am not sure she knows to cry because she is in pain. She hasn't had s seizure for a couple years. The meds we have her on have kept them under control. She has asthma too but we have her on nebulizer meds that help with that too. She is very small. At 7yo she is only 31 ˝ inches tall and weighs 21 lbs, 10 oz. She is about the size of a 15mo baby. That is nice when you have to carry her and move her around. She wears a size 2T or 24mo. We know that one day the Lord may take her home so we just take it one day at a time with her. She can be really good one minute and sick the next. It's always a guessing game. There have been lots of rough times for us but the Lord always gives us the strength to get through. When people ask me how I do it I just remind them that you do what you have to for each of your children. They all have different needs and although Hannah's needs seem to be a lot she can be easy in other ways. She doesn't talk back or leave her toys out…she doesn't disobey or do a lot of things that "typical" kids do. She is very tolerant no matter where she is or what she is doing. She can entertain herself very easily, she always has her hands and feet with her. I don't mind when people ask questions about her. I wouldn't know anything about all that if I hadn't learned it. I had never seen a child with an unrepaired cleft lip, gtube feeding or a trach. I used to wonder what it was like to have a child in the hospital…I found out! Now, I don't "wonder" things like that anymore. 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