Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Jordan UPDATE: 6-6-08 Hi Elizabeth, I just wanted to take a moment and tell you thank you for the birthday card you sent along to Jordan. I know it has been way to long since I updated the girls and noticed that they were even taken off the pages. Sorry I lost touch with you all. Jordan just turned 6 and is doing really well. She is still a tiny little thing but eats really well. She is smart as a whip and keeps me hopping all the time. She is reading and doing simple math and has a real thirst for knowledge. She is in a ballet this weekend and has a special part in it as well. She loves to dance and is quite good at it. She is a really good big sister to Madison as well. Madison is doing well also. She is now three and is a tiny thing too. She is delayed in most areas but is a happy little girl. She is hard to understand due to a speech delay but she tries very hard. I don't remember if you knew she had open heart surgery at 23 months and then at age three had her palate repaired. She will still need 1-2 more surgeries to help her talk correctly and at least a couple more heart surgeries. She continues to stay home due to her lowered immune system and has teachers and therapists who come to her. She loves it. Today she is sick with a fever which we have not dealt with since Oct last year. She is prone to seizures when she has a low grade fever so I am praying that this is over soon. Thank you again for remembering Jordan. Hope you are doing well. Pam Miller and the girls UPDATE: 7-05-06 I have a new picture of Jordan I would like to share with everyone if you could put it on her site.  Thanks a lot. Pam UPDATE: 5-31-06 Jordan celebrated her 4th birthday today. Wow she has sure come a long way! I remember leaving the hospital with her when she was 3 months old. They basically put her in my arms and said, "just take her home and love her" Well love her we did and she has really blossomed into a wonderful little girl. I know everyone at the hospital who would remember her would be amazed. She is still a tiny little thing but she is growing. She is getting taller and is up to 27 lbs. She eats really well and now drinks really well also. She still has her mic-key button for venting purposes only. She has a wonderful vocabulary! She will talk with anyone who is willing to listen. Her insight is amazing. Just the other day she was talking about my brother who died very suddenly last year. She said, " Remember when Uncle Mike was in his blue baby crib (what she as an almost three year old called his blue lined casket)." I told her yes I remembered. She then said, " That was a very sad day, wasn't it mommy," I said yes it was and she then asked if Aunt Denise (my brothers wife) was still crying. We had a short discussion about the whole thing and then she was off showing me her new found skill, skipping! She is also such a good big sister to Madison. She seems to really know what makes her sister happy and works hard to keep her that way. She of course has her feisty side but then again, I believe that is what has brought her this far. Thank you for all who have prayed for this little one over the years. Pam UPDATE: 3-28-06 Jordan is a very busy little girl with a zest for life.  Sometimes a little too zesty!  She has been sick the last couple of weeks with a nasty bug that settled in her chest.  She has been on nebulizer treatments and antibiotics.  I think she is on the upside of this bug and I will be glad to be done with the treatments.  Take a very busy little girl and speed her up with that medicine and it is hard to keep up with her.  Other than that she has been fine.  We go back to the doctors at the end of April.  So far she has not gained any weight.  She is still at 26 lbs.  Hopefully the appointment to take out her mic key button will not be postponed because of weight gain.   Jordan is a wonderful big sister, she just loves Madison.  She is on the bed making Madison laugh as only she can do.  She keeps us all on our toes with questions of "why?" and we are so thankful.  Thanks as always,  Pam UPDATE: 1-27-06 Wow I can't believe it has been since before Christmas since I updated Jordan's page.  All has been going well.  Jordan went to the GI doctor today and we have a date for getting her button out!  We are going to do it for her birthday in May.  Between now and then she has to really try to eat and drink lots. She is 26lbs and 36 3/4" tall.   She is still below the 3rd percentile for her weight to age but if you do weight to height she is hanging in there for the 5th percentile.  The doctor said she is just going to be small.  She is almost never sick and developing well in all other areas.  She is excited about taking out the button so tonight when I said you have to eat all your dinner, she gobbled it right up.  That's about all the news for now Take Care, Pam UPDATED: 12-7-05 Jordan continues to progress and do well with everything in her little life.  She is so excited about Christmas.  We have a calendar counting down the days.  We have some really fun things on the calendar like present days and candy cane days.  She gets up every morning ready to see what the day holds.  She is opening up a piece from her Nativity set everyday until she gets to baby Jesus on Dec. 24.  She just loves it.  She also can recited the entire "Twas the night before Christmas" poem.  She just blows everyone away when she starts and finishes it.  She really is amazing. Sorry for the bragging but God has blessed us beyond what we ever hoped for    Have a very Merry Christmas, Pam (mommy to Madison and Jordan) UPDATE: 9-27-05 We are way past our normal update time but things are so busy at our house.  It seems like we are always at a doctor appointment.  Not for Jordan but for her sister.  Jordan is doing great.  She is gaining weight and eating well.  She is talking and running and climbing. People who knew her just two years ago call her a little miracle.  And we know that she is.  Today at the immunologist office she found a little piano.  She sat down and started singing the B-I-BL-E.  It was just too cute.  We are still using sign language with her as there is a chance that her sister will have trouble with speaking.  Jordan is having such a good time with it and you can tell the idea is exploding in her little mind.  I can't keep up with her.  She keeps asking me how to say things and I have to look them up for her all the time.  She is a little sponge.  My song for her is "You are my sunshine" and she is.  Thank you for praying for her and watching what God can do! Pam (mommy to Jordan and Madison) UPDATE: 8-10-05 Hi to everyone, Little miss Jordan is such a big girl these days.  For one thing she talkes like she is 5.  She is so animated that people are always saying she needs to be in the movies!  She also has graduated out of her crib and into a "big girl bed".  She stays in it nicely and asks if she can get up.  We are blessed.  She is eating really well and drinking well too (maybe the 90 degree temp help that).  I actually think she is well into the 24lb mark!  She is also 35" tall and lets us know all the time she is a big girl.  She still has her Mic key button and lets us know that she need to use a venting tube to burp.  We are praying that one day she will be able to do that without the help of the tube. Also Jordan is going to be the big sister.  We are in the process of adopting a new little baby named Madison.  Look for her pictue in the 2005 babies!  Jordan loves Madison and will be a good sister to her.  We love this site and continue to pray for those on it.  Take Care, Pam UPDATE: 6-5-05 Jordan turned three on May 30th. It is amazing how far God has brought this little girl. I am so glad that I have kept a journal on Jordan because I can almost forget how hard she had to fight to get to where she is today. I know God has a plan for this little one. She touches everyone she comes in contact with. She just passed with flying colors all areas of development as far as the school board is concerned. They really couldn't find anything that they could do for her! Isn't that nice to hear. She is a princess at heart and sings all the disney princess songs. She keeps us smiling always. She usually gets up in the morning singing and goes to bed at night singing. She is still a tiny little thing and I think that is what gets her all the attention from people. They are amazed that all that talking is coming from someone so small. But she doesn't know she is small and keeps up the best she can with kids her age and older. Her eating and drinking could always use some improvement but we haven't had to go back to tube feeding so we are happy. She still has her button but we only use it after swimming or an occasional big meal (those don't happen often). Thanks for checking in on her. We continue to pray for all those on the site. Take Care, Pam and Jordan UPDATE: 4-14-05 Just a quick update on Jordan. She is doing really well. She is eating and drinking better each day and gaining weight at her own pace. Her speech is amazing and she is doing so much better with her gross motor skills. She is still on the tiny side, weighing in with only her "birthday suit:" at 23.3 the other day. She is on the charts at about the 5% for her height! She is an amazing little girl and she is looking forward to turning "free" (translation three) the end of next month. We went to Disney with her for the first time and she had a blast. She loved it all. Our baby Madison is doing well after her g-tube surgery and is adjusting well to everything. Thank you for your prayers for us during the last month. Pam UPDATE: 3-25-05 This has been an especially hard week for us as my youngest brother passed away very suddenly and without warning of being sick. He died in his sleep of massive heart attack. We have all grieved and Jordan has been no exception. She has said things like "I'm sad for Uncle Mike" "I need to tell Uncle Mike goodbye" and "I need to go see Uncle Mike in his "blue baby crib" (that was the color of the lining of his casket). I don't know how much of this she will remember as she gets older but she has been perceptive way beyond her years, knowing just what to say and who to say it to at the time. The day before this happened the foster baby that we have was put into the hospital. God knows all things and the timing for that could not have been better. She is still in the hospital and has all but quit eating by bottle. She will no doubt have a g-tube shortly. Please pray that the doctors will know just how to treat her. If they do put a g-tube in I am praying that they don't have to do a fundo. That has been what has given Jordan the biggest problems. Jordan continues to be our sunshine through all this trauma. She also continues to gain weight. She was 24lbs on the scale today! (fully clothed but hey) We are so proud of her. Thanks for the prayers Pam UPDATE: 2-28-05 Hi to everyone. Jordan is fine and finally growing. She has grown almost 2" since Christmas. She also has gained weight! I believe that she is over 23lbs !!! She has really taken off on her eating and drinking. She even asks for drinks of "coldy water please" throughout the day without me reminding her. She has mastered the art of the potty and went on a trip out of town for 6 days with no mishaps, night or day. We are so proud of her we could just pop. We were in Michigan and Jordan got to play in lots of snow. She made her first snow man and went sledding. She loved it all. We are so thankful for all who have prayed for Jordan over the year or so she has been on this site and we are looking forward to the day when she is completely healed. God is so good. Take Care, Pam UPDATE: 1-13-05 Hi to all, I waited to update Jordan's page until we went to the GI doctor on the 18th of this month but you know the story.......the best laid plans of mice and men. Well, if you are a parent of a child with a g-tube you will find great humor in this story. I am getting ready to go out of town tonight and Jordan is staying home with daddy. Well, while we were at My Gym today Al, my husband said, "What should I do if Jordan's tube comes out while you are gone." I replied," Don't worry, we haven't had any trouble with it in a very long time. Don't buy trouble." Well, literally 20 seconds later Jordan came off the trampoline and down on the floor drop her mic-key button!!! You can imagine my surprise. So on the day when I had planned to wash and pack I found myself scurrying off to the GI doctor for an early appointment. I didn't have any spare buttons and there was a chance that she would get hers out at our appointment on the 18th. So I washed off the button that I pick up off the floor and stuck in back in and used tape to keep it in until we got there. Jordan began crying when we got there, "Don't take out my special button, I love my button." The whole office got such a kick out of her. Well, the end of the story finds me at the medical supply place getting a new button. Since Jordan still has no way to burp or throw up should she need to the Dr. thought it would be wise to keep it in a bit longer. She has gained only about 10 oz in the last 4 months. But he said so long as she gained it was still OK that she weighs only 22.2 lbs. So we are OK with the new plan even though I was expecting to get it out this month. She is doing great in all other areas and for that we are extremely grateful. She even made potty training her new years resolution and she had it whipped in just a few days. Dry days and nights! Way to go Jordan! She is the joy in our home and lives. We are so thankful that God has allowed us to be her parents. Take Care to all, Pam UPDATE: 11-29-04 Hi to all, This has been kind of a hard month for Jordan. She has had one thing after another. She had a cold that lasted almost three weeks with a terrible cough. Now she is dealing with a stomach bug that has lasted more than a week and last night she started with a fever of 102. Today it is some less but she is complaining with pain in her mouth. So we are off to the doctors to make sure she doesn't have strep throat. I can only imagine that she is getting sick so often right now because she is not getting enough nutrition to keep her imune system healthy. She is eating and some days she does well but she has not put on any weight in almost two months. Developmentally she is doing great and continues to amaze us with her vocabulary. If she gets the OK from the doctor we will be heading north to MI to see her big sister compete in a swimmeet. We do not want to have to go back to the g-tube and are hoping for it to be taken out in January but we also don't want her to be sick all the time. Please pray with us that she gets up and over this hump. Take Care and God Bless, Pam UPDATE: 10-31-04 Hi to everyone, Another month has flown by here at Jordan's house. She has a cold right now and is really coughing but it doesn't seem to slow her down. She still has her sunny little disposition. She continues to be tube free as we call it. She says, "No milk in the tubie." Today makes 8 weeks. If she continues to gain weight and has no problems we will be getting her button out in January. She is topping out the scale at 21.5 lbs. She also continues to delight us in all areas of her development. She loves to sing and run and play "kitchen". She is going out trick or treating as Tinkerbell and I must say she is the cutest little Tinkerbell I have ever seen. We continue to pray for everyone along this journey called life. We praise God during times of sickness as well as health. Love and prayers Pam UPDATE: 9-30-04 Hi to everyone, Well Jordan is 28 months today and wow what a month we have had. She is 3 1/2 weeks with no feeding pump. I can't believe it. Today I was telling someone that it is one of those things that you think will never come and now that we are here it is hard to remember plugging her in for all this time. We are so excited for her. She is so eager to eat breakfast when she wakes up in the morning. She greats me with a "hi, mom. I need some food" It is so cute. She is eating so well it amazes me! Sometimes I actually stop her because I don't want her to get a tummy ache. The next step is getting that button out of her tummy. We can't wait to be rid of that. She also has become quite the two year old with the familiar words we hear from all of them........NO, MINE, and WHY and just today she realized that she could not only walk down the step to our family room but jump down it. She has also started putting her little foot up to the side of the crib to test out those waters! It is so typical of her age that it fills me with joy. Never did we invision that we would be seeing and hearing these things from this little one. We are going to Sea World this weekend so she can get her Shamu fix. She just loves him and the whole park. We are thankful for a weekend free from the stress of a hurricane! Always thankful, Pam UPDATE: 9-14-04 Hi, Just a quick and exciting update on Jordan. Praise the Lord, she has been 7 days with no pump feedings. She has never made it more than 5 days without having to start then up again because of excessive weight loss and little to no urine output. So we are so excited. She only lost a pound and I really think she has already started to gain that back. She is really excited to eat and her drinking has been good as well. Today was a little slow on both eating and drinking but I think that can be chalked up to a typical two year old. We are thanking the Lord for His tender mercies he has shown towards our little one. Thank you for your prayers, Pam UPDATE: 9-3-04 Hi to all as we await this very slow moving storm in Florida. It already seems as though we have been trapped inside for an eternity and the storm hasn't even arrived. The good thing is that in all this waiting the storm has gone from a catagory 4 with 5 being the worst to a 2. We are in South Florida so we are expecting lots of rain and some wind but not to the extent that they were forcasting a few days ago. Jordan is oblivious to it all. I think she is just glad to be home. She was an angel on our trip to take big sister Holly back to college. We were gone for almost two weeks and she just took it in stride as though she were at home at each new place we encountered. She has been doing really well with her eating and somewhat better with her drinking. She is asking for food constantly now but eats only a few bites. But I figure if she eats a few bites about 12 times a day that it will all add up. And it must be working because on my scale she is up to 21 pounds. We are only giving her her nighttime feeds of 2 cans of pedisure about every other night now and sometimes even every third night and she seems to still be gaining. I think she really is catching on and will be free of this thing very soon! Jordan has had a vocabulary explosion this past month. She sings all kinds of songs. She also is all about adjectives. Things are now not only "big" but "very big, giant, heavy and a grunt" just incase you didn't get the full scope of things. She is the most expressive little thing not only in her words but her facial expressions. If she thinks that she may be in trouble about something she just pulls out that cute little smile and says "hi mommy, happy?" Not only is she flashing her smile but she is also signing happy. How cute is that? In the midst of this impending storm she still remains our sunshine! Praying for you all, Pam UPDATE: 8-8-04 Jordan's appointment to the Gastro doctor was moved up due to him going on vacation. Are you ready..........she made it to 20 pounds. She was actually 20lbs. 8oz. We talked about removing her g-tube and he said that he would like to see her at least on the growth chart. I guess 20lbs for a 26 month old doesn't get close to the 3rd percentile. He also said that she had to be able to be off tube feeding for six months and get through an illness without loosing weight or using the g-tube before he would consider taking it out. So we are on a weaning process as she begins to eat more by mouth. Drinking still seems to be an issue also. 5 oz a day is just not good enough to keep her hydrated. So we have work to do but we see a light at the end of this tunnel. She will have quite an adjustment at the end of the month as her big sister, who has been her constant companion this summer, will be going back to college in Michigan. We will be traveling by car beginning August 21st. The trip will consist of about two 12 hour days of travel with a 2 year old. Yikes!!!!!!! Prayers for safety and sanity will be appreciated. Thank you, Pam UPDATE: 7-28-04 Hi, For all who have been following our story, the adoption is final. On July 26th around 9:30 am the Judge said it is FINAL! So Jordan Rae Miller is officially ours. Of course in my heart she was mine from the minute I laid eyes on her but it feels good to know that no one will take her from us. It is an awesome responsibility that God has given us and we feel it more with Jordan than we did with our birth children. I guess age and the knowledge of what it takes to raise a child has something to do with that. Two of the three of our older children were with us at the hearing. It was such a nice time. Thank you to all that prayed for us. On a health note, Jordan's cough is gone!!! She went on an antibiotic for 5 days and now on the 7th day she is completely free from it. I just pray that it stays away. She is also eating really well for Jordan. We go to the Dr. on Aug 8th. I will be eager to hear what he has to say! Thank you again for all who prayed for us. Pam, Proud mommy to Jordan UPDATE: 7-13-04 Hi, Jordan has been dealing with a very wet cough for about 4 months off and on. Sometimes I think it is more on than off. She coughs at night, first thing in the morning for several hours, when she falls asleep in her carseat and at various other times. At her two year check up the Doctor said her chest sounded clear and thought that Zertec may help. Well, we are 5 weeks down the road and she is still coughing her little head off. I took her into the Dr.'s today and he did a CBC and chest xray and said that both looked good. He started her on nebulizer treatments for the next week to see if that might clear things up. We are all puzzled with her. She tipped the scales at 19.15.5. I told her if she had just finished her lunch she would have hit 20lbs! That is only 5.5 oz since her last visit of 5 weeks ago. She continues to be her happy little self regardless of how hard she is coughing. Please pray that she quits coughing with the new treatment or that we find out what the problem is. Thank you, Pam UPDATE:6-28-04 I'm 2 years old. Hi to everyone, Jordan continues to do well and has entered the two year old phase of life. She is a little more adamant about things in her life and has realized that she can say NO. It doesn't always work for her but she tries it out as often as she can. Fortunately for us she has not used it when it is bedtime. We have been so blessed with her bedtime routine. She goes in willingly at about 7:00pm and sleeps through till about 7:00 the next morning. She still takes a 2-3 hour nap in the day as well. She is still about the same size, just under 20 lbs and hasn't really gained anything since our last entry. We have not tried to take her off her feeds completely but we are cutting down on the volume she is getting at night to see if it makes her hungrier in the daytime. Drinking is still lagging behind and in South Florida you have to stay hydrated. She ran a fever of 102.6 for a day last week but I really feel it was because she was somewhat dehydrated. We hydrated her well through the night and she woke up feeling fine. Her vocabulary has exploded. She is singing little songs like Twinkle Twinkle and Jesus Loves me. She makes my heart smile when she does it. To think it was only August last year when we began learning sign language just in the event she never became verbal! No, the adoption didn't become final as we had hoped but we know it will be soon. There are some questions as to her ability to keep her Medicaid and at this point we are not able to loose that. Hopefully that will be resolved and the adoption will go through. We continue to pray for all the children on our site and for all the parents as well. God Bless, Pam (mommy to Jordan) UPDATE: 6-2-04 Hello to everyone, My baby has turned two! Wow I can't believe how time flies. It seems that only yesterday she was struggling so to crawl and was dependant on her g-tube for her only means of nutrition. Now she is running and climbing and constantly asking for "wada, cackas, or petabudda bread". She is the light of our lives and gives us constant joy. She is certainly a "Rae" of sunshine flooding our family. Thank you Jesus for this precious gift ! I tried to take Jordan off her pump feedings because I thought she was eating so well but in just 5 days she lost about two pounds and the doctor thought we better take it a little slower. So we will try again at a later date. She is eating and drinking so much better so I know it will not be much longer. We were at the doctors today and she was a big 19 lbs. 10 oz. and she was 31 1/4" tall. The height actually puts her on the growth chart at the 3rd percentile. That is the first time she has made it on the chart! Of course her weight has a way to go to make it on the chart. According to what the doctors say, since she is two now, there is no more adjusting her age. He was thrilled with her vocabulary and her ability to put words together as well as her understanding level. Over all he said she looked great. We went to see Shamu for her birthday and she loved every second of it. We were at the park 13 1/2 hours and she was great the whole time. We are having her Adoption/birthday party on Saturday and praying for good weather. Thank you for continued prayer for Jordan that she will be able to discontine the need for the G-tube feedings, that she will be able to gain weight and that her development will continue to stay on target for her age. The attatched picture is Jordan in her big brothers work shoes! Take Care, Pam UPDATE: 5-1-04 Well, we are getting close to the two year mark with Jordan. She is 23 months old today and such a blessing to our family. Jordan is 20 lbs and her doctor told me that she is doing well and he would see us in 4 months. That was just what I wanted to hear and so our goal is to get her off her tube feedings over the next few months. We are praying that she will be able to maintain her weight. She is such a petite little thing. Jordan goes to the dentist next week. Due to her birth problems she has no enamel on her teeth so we are eager to see what the dentist plans on doing with her teeth. Jordan continues to amaze us each day. Her speech teacher scored her the other day and said she has an understanding level of 2.7 years and a vocabulary of 2.5 years. She is very active and tries to keep up with all of her friends. She is running and climbing and swimming. She is our little miracle baby. The adoption is still not final and we are praying still that it will happen before her 2nd birthday. That only gives us a month. Please pray with us that Jordan will be able to come off the g-tube feedings. That the dentist will do what is best for her little teeth and that her adoption will happen sooner rather than later. Thank you all for your prayers for Jordan and know that we look forward to each update from all of you and continue to pray for all our Children of Promise friends. Take Care and God Bless, Pam UPDATE: 3-29-04 Hi everyone. It is time for my monthly update. Jordan is 22 months old today and she is still in the 19 pound range. I don't have the exact weight because, Praise God, we have not been to the doctors in a month. She is still coughing at night mainly and it effects her sleep (and mine) and also her nighttime feedings. Sometimes she coughs so hard and for so long that I just have to turn the pump off or down really slow. She is not doing a whole lot better with her oral feedings. She takes a bite or two at each meal. She did eat a whole slice of sandwich cheese today which is more than she has eaten in a long time! Again other than eating she is doing so well. She is running and climbing all over the place. Her PT was concerned because she was not climbing last month but have no fear she has it down pat this month. She is talking up a storm and she remembers everything. She knows the signs for all her colors now and is beginning to put two words together in her speech as well as her signs. Jordan is our delight and we can't wait until we can give her our last name for real. The adoption agency called and said they thought we could plan on May. So by her 2 year birthday it should be official. Thank you for your prayers while she was so sick last month and please continue to pray that she will figure out this eating thing and be able to get rid of the g-tube. Take Care, Pam, Proud mommy of Jordan UPDATE: 3-11-04 Jordan seems to be doing much better. She is her perky little self for periods of time throughout the day. She in not running a fever anymore and coughing less. She is still not eating or drinking much of anything. I don't know if she has lost or gained anymore weight but she is able to tolorate her tube feeding now so I would think things should even out now. It is so wonderful to hear her laugh or see her run across the floor again. Thank you for your prayers while Jordan was sick. Pam UPDATE: 3-8-04 Well Jordan's temp is back to normal but she is not. She is really having a hard time with her cough. Today I can hear her wheeze. She still is not eating at all. She has put a bite or two in her mouth but spits it out. I think she thinks that is what is making her cough and choke. She is having trouble with her pump feedings as well. She gags and cries for me to turn it off. She is cranky cranky cranky. Maybe that means she is on the mends. Well thanks for your continued prayer for our little one. Pam UPDATE: 3-5-04 Jordan is a sick little girl. She has an ear infection and pneumonia. She has been running a high temp and coughing really bad since Wed. She has also lost about 11oz since Wed and you know how we love those oz. on Jordan. She has not tolorated anything but Pedialyte since Wed. either. Pray that the Lord heals her little body quickly an help her recover her lost weight too. Thanks, Pam UPDATE: 3-2-04 Jordan continues to do well in most all areas of her little life. She is "running" now and really trying hard to jump. She tells me all the time, "jumping" with her little feet never leaving the floor. But she certianly has the concept. Her balance is much better and she has begun walking down a small step out our door without assistance. Her language skills are really coming along. She was telling me about a dolphin the other day and she said," dolphin, jump, splash, ocean, captian (that is captian Feathersword from the Wiggles). So she is getting the concept of sentences. She is still using her sign language for words she knows. Eating continues to be our big battle. She just says "No" most of the time that food is offered to her. She will drink about 2 oz of water a day but nothing else. So basically she is living on Pediasure through her G-tube. She is on three cans a day and so she is gaining weight which is all doctors are concerned with. I hate to see her loose her ability to eat. She is on a medication to help increase her appetite but I don't see it working at all. We go for a weight check tomorrow as well as an appointment with her Neurologist. I am sure both will be fine. Thanking God always for all things, Pam UPDATE: 1-30-04 Jordan is now a big 20 month old. Well not big. She is 18 lbs 3 oz. The doctors have had me stuff her with 16 oz of Pedisure and 16 oz of formula per day. We had a few weeks were she would not eat or drink anything by mouth but praise the Lord she has started to eat. Now it is not large amounts by any means but it is something and that is what we look for. She also has started drinking some water. We go back to the Dr.'s on Feb. 4 so I will be anxious to see what he has to say. Other than eating we can't believe how she is growing. She repeats anything you say, tries to say nursery rhymes with us and sings the Wiggles teddy bear song so cute. She has a little playground out in the back yard now and she has gotten much more steady on her feet. Much less falling. We went to the Neurologist and he wants to repeat her MRI. He said that the decreased white matter in her brain may have just be due to her prematurity and that it could have corrected itself. We will see. Anyway she is doing really well and we praise God for her all the time. Take Care, Pam UPDATE: 12-29-03 Jordan is now 19 months old and about as big as a minute (17.6 pounds). But she doesn't know she is tiny. She is active and exploring her world as though she were a giant. She doesn't miss a thing. She is such a pleasure to have around. She is learning something new everyday. We have a couple of concerns with her though. She has been falling a lot recently. We are keeping a close eye on it to see if it is just "normal" or if it is because her left leg is giving out on her. She goes to the neurologist on Jan 20. Of course our other concern is her eating. We have really gone down hill on the eating and drinking by mouth over the last several weeks. She is having two bolus feeds during the day and I guess that keeps her full because she is drinking nothing by mouth and eating very little. She should be gaining by virtue of getting an extra 290 calories from the bolus feedings and that is the goal of the doctor. But I really don't want her to loose her ability to eat and drink on her own. Other than that she is great! Thanks for checking in. Pam UPDATE: 12-17-03 Hi, just a quick update on Jordan. The doctor didn't like Jordan's weight gain the last time he saw her and has put her back on reglan which makes her grouchy and has me giving her two feedings per day through the g-tube of pediasure. She is supposed to have it rather quickly so as to help stretch her tummy. Well, needless to say it is not comfortable for her and she does not like it a bit. Also she is so full from the Pediasure that she is not eating or drinking anything. She is also getting feedings of her formula during the nighttime hours through her tube. We are praying and waiting for her to get used to this new routine and get back to eating . She never was a good eater but at least she ate something. She went back to the doctors after being on the new routine for a week and she had gained only 1 oz. Thanks for your care and concern. Pam UPDATE: 12-01-03 Jordan is now 18 months old. She is doing so well that sometimes we wonder if her early months were all a big dream. Her main problem still is her weight gain and eating. She is still just 17 lbs. We have not had a month where she has no weight gain before. She has not been eating well this month and the biggest thing is that she is sometimes not drinking anything by mouth. She has also started having some problems with gagging when she is getting her g-tube feeds. Now on to the good news for the month. Jordan is meeting most milestones for her age. She is just about running, she is getting up and down a step, she even learned to go up and down her little slide. She is talking up a storm and signing right along with it. She is a delightful little thing and as always, keeps us smiling. I thank God for Jordan and all that he has enabled her to accomplish. Thanks for checking on us, Pam UPDATE: 10-30-03 Hi to everyone. Our Children of the Promise site keeps growing and growing. There are so many little ones to pray for and watch to see how God answers. Well the latest update on Jordan is good! She is now 17 months and her official weigh-in today was 17lbs exactly. I really was expecting more because she has been eating very well. She even asks for more occasionally. I'm not sure if she really wants more all the time........she just likes the sign for more! She is still getting about 16 oz. of formula via g-tube. We are all amazed at how far she has come. She walks around the house staying busy and making her happy little sounds. She makes us all smile! We are so blessed to have her in our family. I think we may have an official adoption date before the end of the year! A new little wrinkle in Jordan's life is that she went to the dentist per our pediatricians advice and she has no enamel on her teeth. That explains the yellow color to her teeth and the odd shape. He said it was due to her infection before her birth and in her early days of life. He said it would mean that we have to watch for decay a little closer than usual but said that he didn't think that her permanant teeth would be affected. It is sad to think that this and all that this little baby has been through is because a doctor was negligent! I believe that God always shows us some good through a tragedy and Jordan's life is no exception to that. She has passed all expectations and continues to move forward. Pam UPDATE: 10-03-03 Jordan is doing well praise the Lord. She is walking and signing and talking. All good things to be thankful for. Thanks for all you do. Pam (proud mommy of Jordan soon to be Miller). UPDATE: 9-25-03 Well our g-tube experiment went pretty well considering Jordan has been on forced feeding all her life. She was eating somewhat better without the nighttime pump feeds but she was not drinking one bit better. Although she would wake up thirsty and sign that she was thirsty and wanted milk, after the first 4 oz things slowed down and she sometimes would take 4-6 more oz throughout the day. Of course her urine output was really low with one or two barely wet diapers in a day, even waking up dry today. She lost some weight but not as much as I was afraid of. So we go back to the nighttime feeds and try again in a month or so. I know it will not be long. She really is doing very well in all areas of her development and I can't see why this area would be left out. Thanks for your prayers Pam UPDATE: 9-18-03 Thank you so much for your prayers for Jordan and her spinal tap. Praise God all is well. The doctor called today and let us know there is no sign of syphilis in her spinal fluid. Our next big hurdle is her g-tube. I really feel that Jordan is ready to try to make it without her pump feedings. She has just gained 10oz in a two week period which is more than she has ever done in a months time. So tonight starts the experiment. We have started out at 16 lbs. 8 oz. She goes back to the doctor Wed next week. If she maintains or gains we will press on and if not then we will put her back on the pump feedings and give her more time. Pray that she will not have problems with dehydration as drinking is a real problem for her. Eating solids is not nearly as big a struggle. Thanks so much Pam UPDATE: 9-09-03 Thanks so much for your prayers. Jordan's test went well today. I will get the results in a couple of days but I am confidant that all is well. They put her to sleep to do the spinal tap and she did great. She had no trouble waking up and seems to have no ill effects from the whole thing. God is so good! Thanks again, Pam UPDATE: 9-06-03 Jordan will go into the hospital for a spinal tap on Monday morning (Sept. 8 ) at 9:00am. They will be ruling out the posibility of there still being syphilis in her spinal fluid. It is a routine test that should have been done several months ago. They attempted it then and after 4 tries they got blood in the fluid and gave up. So now they think they need to do it again. Pray that they are able to get what they need on the first stick and also that there will be no lasting effects from the procedure. Thank you for your prayers. Pam UPDATE: 8-21-03 We have had a busy summer taking care of my mother with a broken leg but Jordan has been the bright star through it all. She has brightened my mom's days as well as the others in the Rehab and of course all the nurses. She has started to take steps if someone is there to catch her when she falls. She really doesn't like hitting the deck so she is very careful. I thought we had made it to 16 lbs but we were at the gastro doctor today and she was 15.5. She has grown almost two inches. She is 14 1/2 months now. She is starting to say some words and also signing. She knows: more, milk, want, eat and all done. Those all help in the eating area where Jordan seems to have the most trouble. She is still G-tube fed through the night and she has days where she eats really well and other days where you just can't get her to eat much of anything. I am thankful to know that even when she doesn't want it I can feed her through the tube. I would love for her to be off it but at this time she still needs it. The Dr. said he thinks that just all of a sudden she will just start eating and drinking. I pray he is right. Jordan is the joy of our lives. Pray for her big sister as she goes back to college and has to leave her. It will be tough. UPDATE: 8-04-03 Hi, It has been a while since I sent in an update on Jordan. She is a big 14 months old now and I think right at 16 pounds! This is the month of her actual birthday as she came into this world a little to soon. She is walking around furniture and getting up and down with little effort. She hesitates to let go because she just hates to fall. She is beginning to try to say some words but we have been working on sign language with her and she is use them! It is so fun to see her in action. She keeps us smiling. She is still being fed via g-tube for almost all her liquids. Somehow we just can't get her to drink. She is eating three meals a day. She likes a wide variety of foods but the quantity is still not adequate. Other than her feeding issue she appears to be a happy healthy baby. Praise God! She is a little miracle! Pam UPDATE: 6-02-03 Well, Jordan turned one on May 30th. What a long way she has come in a year. She didn't hit our goal of 15 pounds by her birthday but she is doing great. She continues to progress in her gross motor skills. She is crawling and standing to furniture. She is eating better some days and drinking more from a cup. She is up to 6oz per day from her cup. We are trying to see that number go up so we can discontinue her G-tube feedings. That is in the future and I believe that God would have that for her. She is a delight that God has blessed us with. We feel so privileged that God chose us to be Jordan's parents. Thank you for your continues prayers for our little angel. Pam UPDATE: 5-27-03 A kick in the gut never feels good but that is what some doctor reports feel like. But I know that my God is bigger than any report. About 4 months ago Jordan had an MRI of the brain and also a failed spinal tap.( they tried 4 times and finally gave up) After about a week I called the neurologist and he said that her MRI looked good and that he would call me about rescheduling the spinal tap. Well, I never heard from him. Several weeks later I went to the pediatrician with Jordan and he asked me about the test. I told him what I had been told. He, going on the neurologist report,said he did not think the spinal tap was necessary and so we would not need to do it. (The spinal tap was to see if there was any evidence of syphilis still being present in Jordan spinal fluid.) Well this is now 4 months down the road and we had a follow up at the Neurologist. He said that she looked good but that her head was not growing like he would like it and that it was measuring under the second percentile, but that goes along with the MRI report. I questioned him and he said when there is decreased white matter in the brain that the brain would not be growing at the rate as would be expected for a baby of Jordans age. I could have lost my lunch! I asked what he meant by that and he said that the MRI showed and overall decrease in the the volume of white matter in both cerebral hemispheres of her brain. He added that Jordan looked good and developmentally she was only a couple of months behind her corrected age and so he would like to see her again in 4 months and basically it was a wait and see thing. I left there kind of stunned and when I got in the car I read the report for the first time. At the the bottom of the report under Impressions it read: 1. An overall decrease in the volume of white matter throughout both cerebral hemisheres. The possibility of a mild form of PVL may be entertained. Wow, and I thought all was well. Well now a day later I am better with the news. As I look at my perfect little girl I am reminded that on December 18, 2002 God began a healing of my baby. No report will steal that from me. And God will heal Jordan according to His will, what ever that may be. I am blessed to have her in my life. She has brought sunshine into our family and I believe that we have been able to be used of God to bring this little angel further than any doctor ever imagined for her. A Happy Memorial Day to All Pam UPDATE: 5-18-03 Jordan continues to surprise us with her new skills. She is crawling all over the place and this week she learned how to pull up and sit down with grace. She went to the Gastro doctor this week and he was not so pleased with her weight gain. He upped her intake by the pump and told me to give her pediasure in the day for the extra calories. Well she took right to the pediasure but now she is not interested in eating her food. I feel like we have worked so hard to get her to eat by mouth and I don't want her to loose that. But if she is always full she may not want to accept anything from the spoon. This is only the second day so I am praying her tummy will adjust and she will go back to eating her food. She has a birthday coming up on the 30th of this month. Sure would be nice to have her a hefty 15 lbs. by then:) Pam UPDATE: 4-23-03 Well another praise report. We went to the doctors today and Jordan finally made 14 pounds. She was exactly 14.1oz. I was quite excited. He also discontinued her synergis shots. Jordan has begun drinking from a straw and is taking about 3 oz of formula throughout the course of the day. She is still not back to eating like she was in the beginning, but she is eating. She has also figured out how to get from a sitting position to her knees but can't figure out what to do next so she just sits back down. Thats a real start! It is hard to believe she will soon be 11 months. Oh she also learned to wave bye bye. It is so cute! Always hopeful for the next milestone, Pam UPDATE: 4-08-03 Well, Jordan is now 10 months old. She went through a period just after I wrote last where she refused to eat. So we are experimenting with her feedings. She is getting all her formula through the night and eating and drinking only by mouth during the day. We have had a little bit of a fussy week because she doesn't know what hunger is and also how to fix the problem so it is a learning process. Today was day seven and she had the best day so far. She is still only taking several cc's of liquid a few times throughout the day. As far as her mobility she is still stuck in the sitting position. She hasn't figured out how to get down. She is not rolling in either direction nor is she getting up on her knees. We have also had some tactile issues come to light. The OT had a large drawer with dried beans in it and she put Jordan in the container. She started to hyperventilate, her little cheeks go so red and she acted like a trapped animal. She was clawing to get herself away from them. I don't know where that will take us. But all is all she is a healthy little baby and a delight to our family. We smile at the very thought of her. God was so good to give her to us. Thanks for your continued prayers and the updates on your precious angels also. Pam UPDATE: 3-20-03 Just thought I would give you a Praise the Lord Update. Jordan is doing so well. She is eating by mouth like a little trouper. She is still not drinking well yet but she tries so hard that I believe she will have it in no time. She is sitting up really well and is really trying to roll over. I think her g-tube keeps her off her tummy somewhat. She is very protective of it and since she has pulled it out and had to have the stoma dilated in order to put it back in twice in the last 3 weeks it is a little tender. She is a happy little girl and she just draws people to her. She is our little miracle in the making. UPDATE: 3-04-03 Jordan continues to do well. We were out of town this weekend when she had a G-tube problem though. We were visiting our daughter at college and Jordan's g-tube came out. We discovered that it had a leak in the balloon and so one small tug from her and out it popped. The problem came from the fact that we were so far from home (the place we were staying was about a half hour away). By the time we got there the tube had been out for about 1 1/2 hours and I couldn't get it back in. We went to the local hospital and they had never put a g-tube in a baby. They tried but were not able to get it in either. Finally after 4 hours they called a surgeon and he said for them to take a plastic cover from the temp. probe and push it in the stoma until the hole was big enough again to put the mic-key in. It was so painful for her. She let them know it too! Anyway she is doing fine now and surprises us everyday with something new. She had some developmental test done last week and is 3-4 months behind in most of her skills. We are praying that it is because she is such a content baby and not that there are lasting effects from her birth. Thanks, Pam UPDATE: 2-10-03 Praise the Lord!!! Jordan had her test and all went well. The girls that worked with her were great. I almost wish I could feed her barrium. She gobbled it right up. They said all looked well and that she only had a little delay in swallowing which would clear up with practice. So we are really pushing the solid foods and working with a sippy cup. Thank you for your concern and prayer. Pam UPDATE: 2-07-03 Hi, Jordan goes to the hospital tomorrow for an UGI to see what is happening to her food. She has been burping a lot and seems to be irritated by it. She is also having a suck swallow test. She has begun eating by mouth a little and has trouble with swallowing properly. One doctor said with practice it will get better but we want to make sure it is only going where it is supposed to go. We still have not rescheduled her Lumbar Puncture. The Dr. wanted to give her spinal column time to repair and rest before they tried again. A Praise: Jordan is trying to suck from a sippy cup!! She doesn't swallow the milk very well, but she is sucking just a little. We have gone through about 6-7 different ones and I guess we found one she is willing to try. Thank you for your continued Prayers Pam UPDATE: 2-02-03 I wanted to let you know that Jordan had her tests. Her MRI was good, whatever that means. The lumbar puncture did not go well and after 4 attempts to get spinal fluid they gave up and she will have to have that test again in a couple of weeks. But Jordan is doing well and has begun to eat by mouth. We are all thrilled. She is still not sucking a bottle but will eat cereal and some foods off of a spoon. Praise God Thank you for your prayers. Pam ADDED: 1-08-03 Jordan was born with syphilis. Jordan's birthmother was raped and the man was infected. She didnt know and somehow the doctors miss this and she was born very sick at 30 weeks. She was in the hospital for 3 months and ended up with a feeding tube. We will not know the extent of damage the syphilis did to her for a while yet. She is 7 months and 11 lbs. She has PT, OT, and ST and is doing well considering the statistics. She will be having and MRI, EEG, and Lumbar puncture sometime in the next week or so. Please pray that all will go well.