Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Harris Children Current Page Page 3 Page 2 Page 1 Photo Album Jon-Jon                                             Rilea and Kaden UPDATE: 2-12-05 Hey Guys - Do you remember a couple of weeks back I told you that we were approved for Jonathon's Vail 1000 Enclosed Bed System. We were told it would take 6 to 8 weeks to arrive once it was ordered; we were expecting it at the end of April, right before Jon's 5th birthday. I call Vail at the end of last week and they informed me it still hadn't been ordered! I then call the DME and they said that the gentlemen that does the ordering was out and to call back on Tuesday to see where the order stood. I made a mental note to myself to call them sometime today to see where this was all going. And just as I had the thought to call them the phone rang and it was the DME to let me know his bed was there and ready to be delivered! - Wow, I was a bit blown away. All that to say it will be here Wednesday and Michael will have the "honor" of putting it together next weekend! Prayerfully Jonathon will transition well and all will go smooth and he will enjoy his big boy bed! Thanks for letting me share, Renee UPDATE: 1-31-05 Hey Guys.... As you know - we fought like you know what to get Kaden his helmet - and we finally got it and he was banded on 11/9. The first month was hard, as we got red spot after red spot, then got sick with a high fever and the band started breaking apart! He had that thing off more than he had it on. December and January has gone by with out a hitch and in late December I was absolutely amazed at his progress. The issue we than ran into was the orthotist that provided the helmet does not discharge patients as they are not the ordering physician. Although I love my ortho and their company, they also were not diligent to do all that I thought they could do with follow up care, only coming out if I thought we were having an issue. On the other side, our physiatrist, that wrote the order - we only see her every 3 to 4 months - so I did not feel she was qualified to give me an okay or not - although - she would always listen to her mommies and together we would make a decision. So, I called over to Atlanta (I live in TN) and spoke to Laura Plank - the ortho that did our STARscan for us. She is a wonderful person. I explained that we really did not have any one to discharge our helmet as there are no real measurements other than the scan and if she thought I should get schlep odown there to get another scan. She took the time to explain to me that most correction is done before or around one year. She asked how old he was and such (he'll be 11 months in 1 week) and she asked me what I thought about the improvement. I told her that if I had to take it off today I would - as although his head is not perfect it looks pretty good to me. She said I could split the difference between 11 months and his first birthday and graduate him in about 2 1/2 weeks - or I could go as long as the helmet fits till his first birthday! I explained that most of the plagio mom's kids were "weaned off" - off during the day for 2 weeks and then checked again. She explained that was for the younger babies, still struggling with tort and back sleeping. She explained that although Kaden still favors his tort side, he is tummy sleeping and up and about during the day with little to no external pressure on his head. Okay - all that said - Kaden could be graduating in the next 2 weeks. Yee haw - a round noggin to love on - too exciting. On a side note - we have another court date set for February 22nd. Please agree with me that there WILL NOT be another continuance filed, but that the termination petetion will be heard and granted. I will keep you all posted. Renee UPDATE: 1-26-05 I just wanted to share a praise report with you all - As you know, Jon Jon is a big boy, and at 4 1/2 , really should be in a big boy bed. However, because of his many challenges - our only solution up until this point has been to keep him in his crib with the safety net/tent that we purchased. Our obvious concern has been Jon Jon's safety - since he can get out of the crib - the safety tent was a necessity. But the crib is way to small and because of the tent I can not work the side rail and getting Jon in and out of the crib is difficult as he tends to stiffen up and does not help. Being a mommy of a special needs child - I have been researching a better alternative for him and actually there are several options available. After a careful deliberation - I chose a Vail 1000 Enclosed Bed System (www.vailbed.com ) for Jon. Now as you can only imagine - this bed is VERY expensive. I took some time and got all the necessary documentation together and followed all the right steps to get it submitted to insurance. I called the insurance company today to see if they had received my request and our case manager explained she would look into it, but that the bed was a very pricey item and with all the cutbacks she wasn't to sure it would get approved. Well, she just called me back to let me know that it HAD been approved and in about 2 months Jon Jon will have his first big bed. We are getting the manual Vail 1000 with dark blue trim! I am just so excited, my little boy will have a place to sleep that will not only give us peace of mind regarding his safety issues,but will also accommodate many of his medical issues too. I just had to giggle - as I had to find like you know what to get Kaden's helmet - and then they just give me the bed !! Too funny - God is so great. Renee UPDATE: 1-10-05 Well, I just received a call from Kaden's case worker - there will be no court hearing tomorrow. Kaden's birth father's lawyer filed for a continuance. I am disappointed - although I know that God's perfect will will come about - unfortunately for me and my impatient self, it will be in His timing, not mine. Please be in prayer that we are granted another court hearing before the end of the month - that is what Kaden's case worker is going to attempt to do. Bummed out - but not shaken - Renee UPDATE: 1-8-05 Family and Friends - On Tuesday, the 11th, there will be a court hearing regarding Kaden's future. I believe I can share that their are several involved in his case, and they believe the following 3 scenarios could happen. (1) The lawyers for Kaden's birth parents would ask for a continuance - which would just make us wait for yet another court date. (2) The judge could decided to give his birth parents more time to get their act together, or (3) a decision could be made to terminate their rights. At present, Kaden continues to see his birth parents once a week for about 1 1/2 hours. Either of the first 2 decisions would allow the visits to continue and may require that the visits increase in duration or frequency. I know that God is in control - I would ask that you would press in for His perfect will to be done in Kaden's life - I know His timing is perfect and that there is no need to worry, but I sure would like to move on with this whole thing. Kaden will be with us for exactly 10 months on the day of the hearing. Oh, and as a side note, pray for Michael that day, as he will have all four of the children (Kaden and Jon Jon are a handful!) and I am not sure how long I will be sitting at court - I need to be there at 9 - but that is no indication as to when Kaden's case will be heard! Thanks in advance for your faithfulness. Renee UPDATE: 1-5-05 Just wanted to let you know that Jon Jon is feeling much better. His cough has all but dissipated and his little nose is doing so much better. He is feels very warm to me - but does not register a tempature. As for Kaden - his nose is still so runny - clear, but runny and he is having such a hard time breathing. He has to wear a bib as he drools profusely for not being able to breathe through his nose. Renee UPDATE: 12-29-04 Just wanted to let you know that both the boys are still not doing well, and to top it off Michael (my husband) and Miklayla and Mikayla are not well. Everyone has the runny/stuffy nose, drainage, soar throat, cough, headache thing going on - it is pitiful. Jon Jon's nose is not nearly as runny, but his cough is terrible - and poor Kaden's nose is like a faucet. Neither of the boys can breathe well through their noses so they are drooling everywhere! My fingers are as raw as there little faces from wiping their noses. I am sure they will be feeling better soon - we have cancelled the weeks appointments and therapies to be sure they are given a chance to recoup. Renee UPDATE: 12-27-04 Hey Guys, Jon Jon went to the doctors today and he has acute sinusitis. His runny nose is awful. The mucous id so thick we had to get the suction machine out last night and have continued to use it today to help keep him clear. The pharmacy was able to locate his medication and Jon is back on it today. Along with an antibiotic and a cough syrup I hope he is back to his old - regular nose soon. Kaden also has acute sinusitis, but seem sot be doing a bit better with it. He, to, is on antibiotics and a cough syrup. Renee UPDATE: 12-25-04 Happy Birthday Jesus !! Hope all of you are enjoying a blessed day today - we have had a blast today - the best part was when Jon Jon said "Thank you mommy" - out of the blue - it is the first time he has ever said anything so precious - I about cried. I will ask that you keep him in your prayers - we are having a hard time locating a medication that he takes - it is not a common medication but he can only take one generic form of it as that form has no red dye. Any how - we ran out - and he will miss 8 doses before I contact the pharmacy in Monday - and prayerfully they will have it. This is one of the medications he takes to control mucous production - and, now he has a thick green runny nose and the Dehistine always helps keep him dried up. We will monitor Jon this weekend to be sure the drainage does not start pooling in his chest. Kaden is also not well as he has a runny nose too and is just miserable - it is like we can not get him happy - just a whiny little thing. In spite of the boys not being well today, we had a great Christmas morning and all the children enjoyed their gifts..... Merry Christmas. Renee UPDATE: 12-5-04 Friends and Family - I was informed yesterday - and will get the paper work soon to have documentation - that there will be a court hearing for Kaden on January 11th. This hearing will determine Kaden's future; will the state be awarded full custody (thus making him available for adoption) or will he be returned to his birth parents. I can share with you that all involved in Kaden's case agree that sending him home would be devastating to his future. All information in the case will prove that he should remain in states care and that their rights should be terminated. I know that his birth parents love him, in the only way they know how, but they are not capable of caring for a healthy child, let alone one with needs. Even though all information would prove he is better off in states custody - it is still the judges decision. I know that God is in control, but my flesh can not help but get "worried". I would like to share one more thing if I could? A while back, I was reminded in my spirit that the Word refers to the thief repaying sevenfold - I thought of several children that slipped through our home and the emotional upheaval we all went through - and suddenly I felt as if Kaden was the "sevenfold". I ask that you agree with me that he is, and that the enemy will not steal and destroy him. I will send another request out for prayer as the date nears - but wanted to give you all an opportunity to press in as the Lord leads.... Renee UPDATE: 11-30-04 Just an update - Kaden has yet another red spot from his STARband. The orthotist was out today to do an adjustment and I am hoping the spot will be gone before this evening. Kaden is doing better with his bronchitis - his lungs sound better and his nose is just about cleared up. The doctors put him on another round of antibiotics to see if we could clear it from his system completely. Jon Jon is doing well, although the Thanksgiving holiday through him for a loop - he is just today feeling more like himself. He just does so much better with routine and predictability. Renee UPDATE: 11-24-04 Kaden's red spot on his cheek is gone and although he still has bronchitis - he is feeling much better - I am going to send you several photos to post - Thanks for all you do - and have a wonderful Thanksgiving... Renee UPDATE: 11-20-04 Family and Friends, As the Lord leads, would you lift little Kaden up. He has acute bronchitis....again - the third time in 4 months. This time he is running a fever of about 100 - 101. He is just pitiful and very lethargic. To top it off he has a pressure soar from his STARband that we are having a difficult time clearing up. He can not wear his band when he has a fever or a pressure soar - so the fact that he is dealing with both now, is actually a good thing, this way we will not have our band off for too long. He is to be banded 23 hours a day and we have had his band off for 2 days. Thanks in advance. Renee UPDATE: 11-10-04 Just wanted to inform those of you that did not know - that Kaden was fitted with his "cranial remolding orthosis" today!! We fought long and hard to get insurance to approve it and it is finally here and we will post pics as soon as possible. I have included a post I sent out regarding plagiocephaly... Wednesday night, Kaden, my littlest one will be sporting his new, fancy headgear! I thought I would share and maybe even help some one else out. Kaden, has a condition called congenital muscular torticollis (CMT) - or a "wry neck" (stiff neck). There are several reasons why he could have been born with it - but nonetheless - he has it. Anyhow - he favored one side because his neck was stiff and in spite of aggressive physical therapy he ended up with positional plagiocephaly (play-ge-o-sef-a-lee) a fancy name for flat head. Plagiocephaly occurs when repeated external pressure is placed on a babies head and it is a condition that became more prevalent when the medical community recommended babies sleep on their back. Often times it is possible to alleviate the "flatness" by making sure you do lots of "positional therapy" or being sure your baby gets lots of supervised tummy time, spends as little time as possible in bouncy seats and swings and rotating their position when sleeping. However, if by 3 or 4 months there is not a noticeable improvement, research shows that your babies head will not round on its own and it could be plagiocephaly - getting a correct diagnosis from a trained professional is imperative. Often times doctors, and insurance companies for that matter, do not agree on positional plagiocephaly or on its treatment. We know this first hand, as several of Kaden's doctors did not agree on having him banded and insurance fought us all the way to a court hearing. Plagiocephaly left untreated, can cause many complications, including persistent facial asymmetry, which can affect mandibular mechanics, jaw function and orbital alignment, incidences of middle ear infections, migraine headaches, temporomandibular joint disorder (TMJ) and vision problems. Plagio can often be treated with a cranial remolding orthosis - like the one Kaden has. The orthotic provides total contact over the prominent areas of the skull and leaves a void over the flattened areas to facilitate more normal skull symmetry. The orthotics have the best results if worn between the ages of 4 and 18 months, when the babies skulls are most pliable and they have the most growths spurts. In extreme cases, surgery by a pediatric plastic surgeon and pediatric neurosurgeon is necessary. I have done extensive research and have found www.orthomerica.com and www.cappskids.org excellent resources. I just wanted to make my "public service announcement" in hopes to inform others why Kaden has a "helmet" on and hopefully inform those that are unaware of positional plagiocephaly. I have become quite "an expert" on the things my little ones deal with and just want to be able to help some one else out if I can. Also - he is wearing thumb splints to correct his thumb abduction - or pulled in/inverted thumbs. These splints will position his thumbs to thumb abduction - which would be the normal position for our hands. Renee UPDATE: 11-8-04 Just thought I'd get you an update. Jonathon, Kaden and I all have the crud - we have been passing it back and forth for 3 weeks - Kaden just got over his second round of bronchitis and Jon is just getting over an upper respiratory infection. As for me - I have no idea what I have - just a dry cough that will not go away and a runny nose. Kaden has three top teeth that just broke through - and I am sure that is the reason why he is so miserable. Jon Jon is coughing and still has a nasty nose but is doing some better. Kaden should be getting his cranial remolding helmet tomorrow!! I will see if I can post pics of the crew soon. Renee UPDATE: 10-29-04 Can you see me doing my jig!! God is sooooo faithful - Kaden will be getting his helmet!!! The denial was overturned!!!! We are in the process of getting the paper work together and it should be ordered by Nov.2nd!!! For those that are familiar with the STARband - we went with the "sky" design. If all works out well - I assume my baby will be banded by Nov 16th!!! As if that news was not good in and of itself - Kaden's visit with his birth parents got cancelled for tomorrow. Thanks fro pressing in on behalf of my little one!! Renee UPDATE: 10-27-04 Isn't it always something? Little Kaden has not been well since mid last week and has progressively gotten worse - I was finally able to get him in today to see the doctor only to find out he has bronchitis AGAIN!! He is sooo pitiful and is very congested. We are continuing with all meds he has been on to keep his lungs clear and his congestion manageable - and we have added antibiotics and Xopenex breathing treatments every 4-6 hours. he also got a Rocephin shot today (boy can he cry!). I pray he will be feeling himself soon - he has not slept well the past few days and the trip to Atlanta yesterday was hard on him. He has an extended visit with his birth parents this Friday - and it is later in the afternoon than normal - please pray for an extra measure of grace for me and extra protection for him - I just have a particularly uneasy feeling in my spirit with it being close to "Halloween" and his birth dad being very gothic. Thanks for all the prayers - Renee Well - tomorrow's the big day - our case is heard before a judge regarding Kaden's cranial remolding orthotic. The legal aid that was assigned to our case, seemed pretty positive and from what I hear, he LOVES to stick it to Tenn Care and DCS. He was pretty sure he could "bully" them into paying for his helmet. The hearing is a phone hearing and it will take place between 1 and 4 tomorrow - I hope - okay I am believing - that I will be posting EXCELLENT news tomorrow afternoon! Renee UPDATE: 10-26-04 Isn't it always something? Little Kaden has not been well since mid last week and has progressively gotten worse - I was finally able to get him in today to see the doctor only to find out he has bronchitis AGAIN!! He is sooo pitiful and is very congested. We are continuing with all meds he has been on to keep his lungs clear and his congestion manageable - and we have added antibiotics and Xopenex breathing treatments every 4-6 hours. he also got a Rocephin shot today (boy can he cry!). I pray he will be feeling himself soon - he has not slept well the past few days and the trip to Atlanta yesterday was hard on him. He has an extended visit with his birth parents this Friday - and it is later in the afternoon than normal - please pray for an extra measure of grace for me and extra protection for him - I just have a particularly uneasy feeling in my spirit with it being close to "Halloween" and his birth dad being very gothic. Thanks for all the prayers - Renee UPDATE: 10-23-04 Hey Guys, Just a (hopefully) quick post. Please lift Kaden up to the Lord as He leads as he is not well. He started coughing Thursday evening and it has progressively gotten worse. He is pitiful, a lot of clear drainage and he is just not sure what to do. He seems okay during the day - but has an awful time sleeping at night. Jon Jon has been coughing since last Saturday - it is a wet cough - but it is not in his lungs and there is no evidence of drainage - so I do not know what his deal is! Also - I continue to ask you to pray for the whole Kaden situation. There seems like there is so much going on with him and we seemingly are getting NO closer to a final answer. I do not need to explain how devastating it would be for him if he is sent back to his birth parents. Oh - I shudder at the thought. We are also still fighting for his cranial remolding orthosis - we will actually be doing a phone hearing on Thursday, the 28th, sometime between 1 and 4. We will be traveling to Atlanta, Monday, as we will be getting a STARscan done on Kaden's head - it is a laser acquisition system that uses 3-D surface scanning that will give us his exact head shape! The whole procedure takes 1.5 seconds!! Hopefully this will help our case on Thursday! I know God is in control, but I am a natural "gotta have my ducks in a row" kinda person and this whole thing is making me wacky! I have a little too much on my plate these past few weeks and I have gotten my self very sick these past few days over all that I am forced to deal with. I guess it would be good if I could just get a hold of God's peace and not let go. Thanks so much! Renee, UPDATE: 10-6-04 Wanted to thank you all for your prayers - Kaden is doing quite well now. I will tell you he was a BEAR when he came out of surgery and for over 2 hours afterwards. He finally exhausted himself to a nap, woke up, ate and is his usually happy, bubble blowing self!! God is so good - and I thank you al for your faithfulness in praying for him. If I may - would you also - as the Lord leads - continue to pray for his cranial remolding orthosis. It is before the medical review board at Tenn Care and the advocacy center I spoke to, said there is a good chance that the denial will be over turned there and we will get his orthotic. If it is not overturned - we will have to take it to court.....always a process ! Be blessed, Renee UPDATE: 10-5-04 Just a quick request (for a change - LOL) - Kaden will be getting tubes in his ears tomorrow. I have not been notified as to what time - but it will be at the Cheyenne Center in Oak Ridge. I have never been to this facility and I am not sure how they work - as I am so used to Children's - but I am sure they are just as competent. Kaden will be 7 months old on the 8th - and although this is a simple procedure - there are always risks. I ask that you believe with me for God's grace in all areas tomorrow. Thanks in advance. Renee, Wife to Michael, home schooling, SAHM to four of the greatest children; Mikayla (13), Rilea (11), Jonathon (4), Resolved gastro paresis, resolved GERD, currently no signs of asthma and although presently showing signs of global and nuero-developmental delays, showing no signs of cerebral palsy. Believing for healing from: allergic reaction to corn, milk, red dye #40 and all adhesive material, aortic root dilation/Marfan's Syndrome suspected, Autistic Spectrum Disorder, band keratopathy right eye, choridal and retinal detachment in right eye/blind, congenital nystagmus/legally blind, cornea adhered to pupil in right eye, g-tube dependent/oral aversion, history of PDA, increased ocular pressure 9/10R - 11/12L, myopia (-12 left eye), SAD, SID, and Vasomotor Rhinitis Kaden (7 mo) Believing for healing from: adenoid hypertrophy, GERD, hypo/hypertonia, inverted thumbs, vasomotor rhinitis, torticollis, plagiocephaly UPDATE: 9-30-04 Friends and Family, Well, it's been a busy few days here - and I thought I would share. I know this is long - but remember, this is very therapeutic for me - it's tough raising these special little ones... The nurse we had for Jon was needed back in the office and was unable to keep her home bound patients - so her last day was the 24th. We met a new nurse that day and trained this past Monday - she decided she did not want to work with us - so we are without a nurse - again. At this time Jon Jon's insurance is not sure he qualifies for nursing and we are in the process of trying to appeal that decision - it is A LOT of red tape - but we should have an answer in the next several weeks. In the mean time - we are without any nursing care. As if that was not bad enough, Jon Jon's home bound teacher, which is also his vision and orientation and mobility teacher, has taken another job and her last day was today. She has spent 3 hours a week with us this school year and almost 2 hours a week last school year. We have come to love Ms. Angela, not only as a teacher - but as a friend - and she will be sorely missed. (surely, more by me than Jon!) The school system here is unable to meet Jon's needs, so we are putting a hold on all the homebound services we receive until they can. This is all a mixed blessing, as with winter coming, the less people we have in and out, the less likely Jon will get sick. Also, we have a LOT of people in and out of our house - so, hopefully, this will cut down on the constant chaos and interruptions we have and it may be a good thing. (You always have to look at the bright side, huh?) On another note, nothing has changed in Kaden's situation and he will be 7 months old on the 8th of October, he has been with us since he was three days old. This has been emotionally draining on us all. There is only a 50-50 chance that he will remain in our home and be available for adoption. We are obviously all in love with him and very bonded, as he is with us. Each time there is a court hearing, there is a chance that the judge will decide he needs to go home and if that decision is made, he will be removed from our house immediately. There will be no time for good-byes, or a time of preparation - he will just be gone. As you can imagine, we are all a basket-case every time there is a court date. Michael reminds me though, that this is the "job we signed up for". He is right, this IS part of foster parenting - but no one said I had to like it :) We are also in the process of fighting for a helmet Kaden needs for his head. He has a condition called plagiocephaly, a skull deformity under the umbrella name craniostynosis. The helmet would reshape his head so that the sutures in his skull would not fuse together. If the remolding helmet is not used, there is possibility of mental retardation as the brain would be pressing on the skull. He could also suffer from constant headaches, vision problems and mandibular problems. The window of opportunity for the helmet to work is 4 months (being the optimal age to get one on) till about 12 months, at 18 months old the brain goes through a huge growth spurt. If he does not get the helmet soon - it will be to late and without surgery we will not be able to correct the problem. The helmet is not cheap - it is in the range of 1,500.00, however the surgery is over 65,000.00 and more risky. I really do not know why the insurance company is giving us such a hard time. I know that I have been on the phone, literally for three days (Fri., Mon., and Tues.) talking to EVERYONE I can, to get the ball rolling for an appeal and to see if there are any resources for funding. I know God can heal Kaden - but my natural eyes says we need this helmet. Please be in agreement with me that we will get what Kaden needs and that we will be shown, once again, the mercy and favor of God - in all situations regarding this precious little one. On a positive note - my first born, my baby girl, Mikayla turned 13 on Monday - WOW, where does the time go - If you see her - wish her a happy birthday - and even give her - and Rilea for that matter - a hug - it's tough being a sibling to special needs brothers :) Renee UPDATE: 9-21-04 Dear Friends and Family. Recently I posted letting you know Jon Jon's heart medication was being discharged. He was off it about 3 weeks and we noticed some positive improvement in his behavior. However, we then realized his heart rate was accelerating - 120's to 160 - in resting mode! After a trial run back on the meds - it is the doctors decision that he is in need of the medication in order to reduce the stress placed on his aortic valve :( I realize Jon Jon's heart needs this medication, but I was so looking forward to one less med and an increase in positive behavior. Other than that Jon Jon has the green gunk again and a wet cough. We are going to try and let this "cold" run its course as he can not tolerate the antibiotics well. Kaden is doing okay - in spite of an ear infection he has had since JULY 26th - with his ear drum rupturing on August 25th. He just finished his fifth round of antibiotics and had his second Rocephin shot. Our pediatrician is sending us to a third ENT on Friday in hopes that he will agree to put tubes in Kaden's ears. Kaden is also suffering from some severe reflux - we are no longer on Zantac - but on Prevacid. The deal with that med is, it is given with his baby food - which he will no longer take as he knows there is meds in it. It has been quite exasperating to get him to take his meds. The concern is the reflux is so severe that it is causing the ear infections? We are also still waiting to get his STARband helmet approved - this helmet will be used to correct the flat head he has in back (plagiocephaly), caused by his torticollis (stiff neck). Kaden's range of motion continues to improve in his neck - but the flat head has not gone away. Please believe with me that we will get through the red tape and that he will get his helmet approved. He will have to be re-casted to get a mold for it - as the last mold no longer fits his head - and this is not a pleasant process. We did get his thumb splints and although he doesn't like them - they will help him. Other than that - he continues on weekly visits and we are no where closer to a decision from the judge than we were yesterday. Please continue to pray as the Lord leads for total healing for Jon and Kaden and for God's perfect will to be done in Kaden's permanency. Be Blessed Beyond Belief - Renee UPDATE: 8-20-04 Okay call me silly - but pray for me any way....we took in another little one today - he is 3 days old. I have little to no info other than this little one needs you to storm the gates of heaven for his sake. He is a little, scrawny thing - but cute as a button. So Glad He is Faithful - Renee Friends and Family - Please keep baby "C" in your prayers, he left this AM to be with a new foster family. Baby "C", was born cocaine addicted and is having quite a difficult time. He is in a good home that have no other children and can give him the care he demands, 24/7. We all look forward to a good nights rest; baby "C" only slept about three hours and scrame the rest of the time. I thank God for His grace in allowing me to know my limitations and my priorities. On another note, continue, as the Lord leads, lifting Kaden and his situation up to the Lord. Glad He is Faithful - Renee UPDATE: 8-18-04 Dear Friends and Family - Oh what a day! First I would ask that you continue to lift Kaden up as he just finished a second round of antibiotics for an ear infection - but now has double ear infection and will be on his third round of antibiotics. His bronchitis has not gotten any better and he is on two different aerosol treatments totaling 5 times a day. We will take him tomorrow for an x-ray on his adenoids and chest. The amazing thing - he is still one smiling happy baby:) As some of you may remember, there was a court hearing yesterday. It did not turn out well and it is about to get worse. For now Kaden is still in states care and will remain in our home. There are some things that are going to transpire in the upcoming weeks that will be VERY difficult for me and I ask for your grace - and protection for my family. I know God is able - and I know He will - but right now I have no idea what He is trying to get across to me. Please lift the whole baby Kaden situation up to the Lord as He leads. Glad He is Faithful - Renee UPDATE: 8-12-04 Praying Friends and Family, Rejoice with me as God continues to show His grace and mercy in Jon Jon's life. We have had several doctor appointments these past few weeks and I wanted to share. We saw Jon's developmental doctor and she is so pleased with his progress. We talked about his autism and cerebral palsy (among other things); she disagreed with the diagnosis of CP, as she felt Jon was showing great signs of coordination, albeit not where he needs to be, but making great strides. (Jon has 17 doctors - and they all do not always agree!) I had told her the wonderful things Jon has been doing, like giving more eye contact, being more verbal and showing the ability to follow a command. I also mentioned that I brought him to the healing service Pastor Jeremy had and wasn't sure how she would take that - she said "Wait a minute - there is definitely something to be said about prayer - but you must keep praying."!!! WOW!! Who knew? Any how, she felt that Jon Jon was going to continue to amaze us and that we needed to be patient and diligent with his therapies (and prayer)! We saw his cardiologist (heart doctor) today. We talked in great length about the aortic root dilation, Marfan's Syndrome and his medication. Jon's heart, in spite of the medication he has been on his entire life, continues to show increased dilation - but not enough to be too concerned yet. There are no positive tests that this doc feels can definitely pin point Marfan's, and that it would be more of an educated guess. If Jon does not have Marfan's, he feels he will have some close cousin to it - some sort of connective tissue disorder. A diagnosis at this time, would not change anything about Jon, but it would be an easier way to explain what he is dealing with. For now, we will just keep monitoring his heart. He also commented that beta blockers (Jon's medication) can cause marked differences in behaviors...mmmmm? Since the medication is not really doing what it needs at the dose it is at, we decided to do a trial run off the medication to see if there are any changes in Jon and take it from there. Wow - I have researched Jon's meds and often the side effects are not appealing, and I often wondered what was Jon and what was medication induced. Believe with me that Jon's heart will heal and that being off this medication will confirm some of my suspicions. As for baby Kaden - he is still not feeling well, he has been battling a left ear infection for almost 4 weeks now. He was not well this past weekend and when I took him in he still had the ear infection from 2 weeks ago, and an upper respiratory infection and bronchitis!! He is feeling much better than the beginning of the week, but is still not well enough to be out. They have him on another round of ant-biotics, an antihistamine, cough medicine, breathing treatments and drops for his ear!! - Whew, I thought he was going to be an easy child - LOL!! I am not sure if this information is to be public or not - so I will try to be as vague as I can be and still try and get my point across. There is to be court on Tuesday, in which some information will be presented and things can get really ugly regarding his birth parents. I would ask that you continue to pray for God's will to be done in Kaden's life. I am aware of the fact that he really shouldn't go home, but that is not my decision - and quite truthfully, I do not want that to be the judges decision - I want God's hand all over this. This whole thing can become ugly and very drawn out and I am asking God to move mightily on this little ones' behalf. I will continue to keep you updated and as always, I covet your prayers. Renee UPDATE: 7-27-04 Me again. I am not sure if you al realize - but in May, Jon Jon's nurse took a new position - and left us to be on our won :( We have managed - and with the new little one, it is not like the girls and I can do a whole lot any ways. We have been having a very difficult time getting this position staffed. There are not many pediatric private duty nurses, and the ones that there are - are not what my Jon needs. Anyhow - to make a very long story short. The nurse Jon had before Ms. Venessa, Ms. Carla, is available and she will be our nurse. We are excited as she knows Jon pretty good, as well as our family and things should work out pretty good. Also - just a side note, Kaden went to the doc's yesterday and he weighed in at 16 pounds, 6 ounces and got four shots and has an ear infection - Oh Happy Days :) He gets his head and hands casted tomorrow to make the molds for his orthotics. Should be an interesting morning! Have a blessed evening!! Be Blessed Beyond Measure!! Renee UPDATE: 7-24-04 Me again. You know how I was having that pity party and I invited you a long? First, thanks for coming, I hate to party alone :) Any how, I have a better perspective on some things and although everything is not what it should be, things are definitely better. Any how, I wanted to share with you that Jon Jon went to get a haircut today. Not a big deal for most - but an incredible deal for Jon. His entire sensory system goes on complete overdrive and it is a fiasco to say the very least. He has only gotten his hair cut twice at the barbers for this reason. I feel so sorry for Mr. Davis (the barber). Any how, we went in today and Jon was such a big boy, he walked in, sat on the couch and was even able to give let me have his game boy from him before we got in there - I was glad as that was to be his reward when we were done. Any how - he walked up to the chair, let me get in and although he had a slight meltdown when I got a cape put on, he recovered quickly and got his haircut with out so much as one tear, no tantrum, no hitting, screaming, pinching, kicking - nothing! He simply shut down, allowed me to talk him through it and kept it together. I am not sure who was more shocked, Mr. Davis, or me. Jon Jon was very proud of himself - and although it may be an isolated incident - I will revel in it for all that it is worth. Oh - by the way - he looks so handsome with his new haircut!! Be Blessed Beyond Measure!! Renee UPDATE: 7-20-04 Dear Praying Friends, It is 4:30 AM in the morning and I am very tired and needing a place to bare my heart. This is very difficult for me to do - Lately, I am having a very difficult time emotionally. I am becoming increasingly overwhelmed with the challenges raising a special needs child, or two, presents. Raising children is one of the highest callings the Lord could bestow on us. What an honor. The responsibilities of raising a special needs child, however, are truly exhausting. I am sure no one could have told me there would be days like these :) There are days - not so much anymore though - that the medical needs of my son have been more emotionally draining than anything else I have had to do. At this point in life I am very thankful that we no longer live in a monotonous fog of never ending doctor appointments, medical intervention and on the brink of life and death. God has proven Himself merciful once again and has spared Jon from many of the negative words spoken over his life. (Things like he wouldn't live till his first birthday, he would never walk, he would never have much "upstairs"). Jon Jon still has many challenges ahead, and our days are still filled with therapy appointments and the like, but it has become more routine now. Any how, as I know God has been faithful, I am having a difficult time grasping that He will continue to be faithful. Jon Jon's, um, "behaviors" are becoming increasingly more difficult to "accept". I guess that would be the right way to put it. He can present me with many "things" I am not sure how to handle. Raising a child with as many different challenges as Jon has can be at best, exhausting. It is tough on me and puts an incredible strain on our family. I know I am not to worry about the future, but at some point you must be realistic and realize what the future could be. (Unless of course God does something different). Please do not misinterpret me, I love my son, with a love that is unfathomable. He is the joy of my life - but to be perfectly honest, there are days I have wonder - what have I done. The emotional strain of raising a child with extreme needs is very draining. The past 4 years has directly revolved around Jon Jon's needs and abilities. I might add, it has also revolved around my abilities too, as if I didn't think I was up to the challenge of what a situation could present, I wasn't about to do it. As a home schooling mom, living way out here in no man's land, there is also undo pressure on my girls. Being a sibling of a special needs sibling is very difficult. Now, we handle life pretty well here, for the most part, in familiar settings, keeping our life, for him, as routine as possible. It is when we are amongst his "peers", or in the "real world" that we (myself in particular) have the most difficult time. It is then, I am slapped harshly with the reality of my son's "disabilities" and there are times when it is almost too much to bear. At present Jon Jon has no idea that he is different than any one else, he lives in his own world, and if that is the way it needs to stay so that his precious little spirit is never broken, than so be it. But, I am, and so is our family, very aware that he is "different" and although we adjust, and accommodate, it is still heartbreaking. We place ourselves in a position that allows us to remember, that, unless God does something, this is how it is, so if He doesn't heal Jon, than He must give us the grace to get thorough the moment. Jon Jon is one amazing little boy, he is funny, affectionate towards his family, and a testimony to God's grace. He also has very difficult challenges ahead, and in reality, for me, he is a life long commitment. I am not trying to short change God, as, like I said, He will continue to use Jon's life as a testimony of His grace and mercy. In now, though, I am living in the everyday stuff and I guess the whole point of my babbling on is, I am asking for you to pray for me. My emotional well being is not where it needs to be. I am dealing with issues that I was not prepared to deal with, and I am dealing with too many things at one time. I need the reassurance that God will impart His grace on me, each day, each moment and that I will be the mom that Jon needs. I do not have time to be an emotional basket case. I need His strength to guide me and more than anything - I am needing His joy - it got lost somewhere in the everyday "stuff". Be Blessed Beyond Measure!! Renee UPDATE: 7-9-04 Just an update on my boys... Jonathon is FINALLY over the runny nose thing he had going on. He has seen his pulmonologist last week and he weighed him in at 32 pounds. He thought Jon was doing well and was really pleased that he has kept out of the hospital. From a lung stand point Jon Jon is making some good progress. We are still working monthly with Jon's psychologist. She makes suggestions to help Jon better adapt to the world he does not live in - his autism will be a life long battle. As for Kaden. He will be doing weekly visits with his birth parents, in their home, until further notice. I am sure this is much more difficult on me, than on him. He will also be fitted soon for a DOC band - it is a helmet type device that will correct his plagiocephaly (flat head). Kaden's flat head is caused mainly from his torticollis (wry neck). Although he has better range of motion in his neck than he has in the past - he is still having a difficult time, and favors one side as his muscles in the right side of his neck are very tight. Physical and occupational therapists have been working diligently to help him. He will also be fitted with thumb loops - an orthotic that will help him pull out his inverted thumbs. He is doing much better with his swallowing, becoming more and more coordinated each day. Feedings have gone from one hour to about 15 minutes to 1/2 hour!! His swallow study showed all is fine and his Ph probe showed reflux, so he started Zantac yesterday. He is four months old today and is weighing in at 15 pounds 11 1/2 ounces!! Be Blessed Beyond Measure!! Renee UPDATE: 7-2-04 Just wanted to let you know the boys are doing better. Jon Jon's drainage is all but gone and Kaden is in much better spirits. He is starting to experiment with the sounds he can make and it is a precious noise. (Jon Jon did this too, but it was much later for him and with less variety). Kaden's visit went okay, I lived and so did he, we are none the worse for wear! Unfortunately, these visits will continue weekly until mid August :( I am not to thrilled, but there is nothing I can do, other than believe God has His hand on it. Hopefully, his birth parents will continue to demonstrate their lack of parenting skills and this will all play in our favor. Thanks for keeping my boys in your prayers - may you be doubly blessed for your sacrifice! Be Blessed Beyond Measure!! Renee UPDATE: 6-29-04 Hey guys.. Please keep my boys in your prayers as the Lord leads. Jon Jon has had a runny nose (a very yucky one) for the past 4 days and now Kaden is sneezing, coughing and has a runny nose! Jon Jon is worn-out, but in good spirits, but Kaden is miserable as he has a lot of drainage and it is making him gag :( Also, Kaden will be picked up Wednesday and taken to his birth parents house for a visit. It is a supervised visit and I know he will not be harmed - it is just very hard on me and since his birth parents are limited in their parenting skills, Kaden gets worn out during visits and tends to shut down. I am usually there for the visits and I am sure (I'm going pat myself on the back here) my voice and presence is reassuring to him. I will not be allowed on the visit Wednesday. Please pray a hedge of protection over him. I am sure as vague as I have to be, I am still making myself clear! Thanks in advance.. Be Blessed Beyond Measure!! Renee UPDATE: 6-8-04 Birthday pictures of Jon Jon. UPDATE: 5-17-04 Hey friends and family, Yesterday, Jon Jon did a summersault all by him self!! For months he has stood with his head on the ground- you know assuming the position - but hasn't gotten any farther. Yesterday he did it and then pushed himself over, I was in the room and scrame in excitement, clapping my hands and telling him what a good job he did. My son was SOOOOO proud of himself, he must have done five or six more summersaults until he was tired out. Small praise for most, but hue for Jon, as these are groups he has a hard time with and we have been working on for a while!! Be Blessed Beyond Measure!! Renee UPDATE: 5-7-04 Friends and Family, Today is a sad day for our family as our nurse has taken a new job and will be leaving private duty nursing. Venessa and Jon Jon have a very, very special relationship. As you can imagine, having some one here that I (and Jon) trusts, has made life much easier for us all. Our family has grown to love Ms. Venessa and we will all miss her dearly. As Jon Jon has a terrible time with change, I am sure this will be the hardest on him. Jon Jon knows when she comes she will put his shoes on and take him outside to swing and play outside, or that she will hold him and rock him as much as he wants - he knows when she is here, it is all about him. At this time our staffing company does not have any nurses to replace her with, as if she could be replaced. (We have been through many nurses and Venessa was the best). Please be in prayer with us as we begin the daunting task of first locating a provider that can staff us and then as we interview nurses to care for Jon. Please also pray for our family, as respite care has often been our saving grace. So glad He is faithful, Renee UPDATE: 5-5-04 Yes my friends, it is that time of year again - time to rejoice with me and my family as we celebrate this precious day. Four years ago, today, a little boy was born 3 months too soon, weighing in at 2 pounds 9 ounces. After a host of medical intervention to get him stable, he spent the next 4 months in the neo-natal intensive care unit, born to a mom who could not care for him he was abandoned with only the nursing staff to rely on. When he was three months old we were given the opportunity to meet him and make a decision if we would like him to be part of our lives. Could be a pretty tough decision when you were facing some "cold hard facts". This little boy would NOT make it to his first birthday, and if he did, he would spend the ENTIRE first year in and out of the hospital because of his extreme prematurity and severe lung disorder. IF he made it he would never walk, be wheelchair bound or at least need devices to assist him to walk, be blind and never have much "upstairs". Also, if you take him, you would need to be "homebound" in order for him to have any chance for survival - his future is very uncertain. MMMMM, not too promising, huh? But, I serve a mighty God, and after just a "little bit" of prayer, I knew we could take him into our lives. REJOICE with me as I celebrate my son, Jon's 4th birthday. In spite of a grim beginning we see nothing but promises ahead. My son only spent 9 days in the hospital the first year of his life because of his lung disorder. In spite of being extremely visually impaired, he is walking, with his own two feet (and just recently learned to shift weight correctly!). His lungs have been "crystal clear" for over 2 years now, he is constantly exploring his world and getting him self into lots of trouble. Tell me, does coloring on the TV, escaping out of the house (having to open a deadbolt and regular lock to do so), hiding behind the couch when his mother calls, pressing the correct buttons on the TV to play the DVD and the VCR sound like a child that has "nothing up there"? And although Jonathon continues to struggle with many challenges both physically and mentally - he IS the MOST AMAZING little boy I know. He has been through so much and yet he is full of laughter and a zest for life. I am so humbled to be part of his life and to be able to see the testimony of God's grace and mercy working everyday! Happy 4th birthday Mr. Man - Mommy loves you dearly! So glad He is faithful, Renee UPDATE: 4-29-04 Jon Jon seems to be doing much better, but still having episodes of retching and gagging with a small amount of vomiting. I am sure he originally got a little tummy bug. It seems now his allergies are bothering him as he has increased mucous production which causes retching and vomiting for him. It is just awful as it takes so much out of him - each feed - even when it is just water - moves "stuff" around on him and causes him great discomfort. He has taken naps the past two days - so I know he is still not 100%. Thanks for all your prayers. So glad He is faithful, Renee UPDATE: 4-28-04 Please lift Jon Jon up to the Lord as He leads. He was up ALL night long vomiting. He had no fever and other than vomiting he was in good spirits?! I haven't woken him up yet so I am not sure how he is feeling today - but he hasn't thrown up since 5AM - so hopefully it was just some little tummy bug. We will take his tube feedings slow today - starting off with half pedialyte and half water and see how he does. Thanks in advance for praying for my little man! So glad He is faithful, Renee UPDATE: 4-16-04 Whew... we are finally home. I guess since Jon Jon is no longer a "baby" we no longer get "first" visit. We got to the hospital at 1, didn't get taken back till 4 and was done with the procedure in about 5 minutes - and we just got home (it is now 6:30!). Any how the exam showed that he has lost more vision in his left eye - from a -8.5 to about a -12! The good news is the pressure that was very elevated has come down - the medicine we are using to decrease the pressure is working! We will be going back sometime next week to order Jon Jon some new glasses! I am glad today is done with and thankful Jon Jon's nurse was able to come and lend a hand - whew!, taking care of two little boys was a task! Thanks so much for your prayers... So glad He is faithful, Renee UPDATE: 4-15-04 Just asking you to keep Jon Jon in your thoughts and prayers on Friday. Jon Jon will be getting sedated once again for an eye exam. I am not sure on the times - only that it will be Friday afternoon. His ophthalmologist is not keen on sedating Jon every year for an eye exam, but at present it is the only way we can get the information we need. I hate that we have to do this again, but Jon Jon seems to be having more issues with his eyes. There is concern that his vision is worsening and that there is increased pressure in his eyes. Of course non of this seems to bother Jon as this is all he knows. I will post his results as soon as I know them. Thanks in advance for your prayers...they are always coveted.. So glad He is faithful, Renee UPDATE: 3-29-04 Praying Friends and Family... Oh the continuing saga at the Harris household... Just got a call from DCS regarding Kaden - seems another family that has his oldest HALF siblings seems interested in having him placed in her home :( The issue is she is no longer working with DCS and would have to participate in the (8 or 10?) week training courses called PATH to re-open her home and then Kaden could be placed with her. Or she could petition juvenile court to gain custody of him, but then she would have no help from DCS at all (no insurance, stipend, help with termination or any services)? We will have a meeting next Wednesday on the 7th with the other family, myself DCS and a third party. I want more than anything for God's will to be done in Kaden's life. I really am okay with what ever transpires and it has taken me a llllooooonnnnggg time to get to this place in life and it is a great place to be. However, that being said - I am still human made up of selfish flesh and if he does not stay here I, along with my family will be heartbroken, even though we will believe it was in his best interest and that God remains in control. Please continue to go to battle for this wee little one - I want to be sure that God's hands are all over this little one and his life. I know that, if for no other reason, God allows me to have these little ones to cover them in prayer and to allow you too to be a part of his life (through prayer!). Thanks in advance for your continued prayers.... So glad He is faithful, Renee UPDATE: 3-24-04 Friends and Family - Thought I'd send an update on our littlest zoo crew member. Kaden is doing well and has already grown 1/2 inch and put on over 1# since coming home from the hospital - he is up to 9# 10 ounces. He is a good eater and I can not express the joy I experience feeding a baby that wants to and enjoys eating!! He is a good baby and sleeps fairly well for a newborn. He does get a bit gassy and will get really fussy if he needs to burp, but other than that you can't complain. UPDATE: 3-16-04 Whew - well, I guess it is with mixed emotions that I post to you that our littlest one is staying with us. I say it is mixed emotions as, as much as I didn't want him to leave - I am sure his birth mom and dad are grieving at their loss also. This little one will be with us for at least the next month or so as we wait for the next court date at which time the judge will decide where to go from there. It would seem with the birth parents past history that the baby would remain in care and eventually be adoptable - but you never know. But for now - I would like you to rejoice with us as we welcome Michael Kaden into our family. So glad He is faithful, Renee UPDATE: 3-15-04 Hello praying friends, Tomorrow is the court date for our newest addition and it will be determined tomorrow if he stays in states care (and therefore in our care). It would be really easy for me to ask you to pray that he stays - however, I know how wrong (and selfish) that would be. God has a perfect plan for this wee one and I ask that you press in, as the Lord leads, for that plan to come to fruition. It is such an honor to be able to be used by God in this (tiny) way. It is difficult though to keep your flesh in line and focused on exactly what you are called to do. Our hearts are attached to this precious lamb - yet we are aware that if God has different plans for him, that he has something even better (hard to imagine) for us. - Did I make sense? Thanks in advance for your prayers...I will keep you posted. So glad He is faithful, Renee UPDATE: 3-12-04 Friends and Family - Our newest little one arrived today - he is 3 days old and just a precious little peanut. I will leave the details vague for most as there is always an issue of privacy and confidentiality for these precious lambs. I will ask that you press in as the Lord leads and pray for His favor over his live and that His will be done. We are already attached and want him to stay - but that may not be the Lords will - so I also pray that you would lift us up as we guard are hearts. UPDATE: 2-24-03 Just an up date on Jon as he saw his doctor yesterday and his pulmonologist today. He still has bronchitis, and although he is one Mr. Cranky Pants, he is doing 100 % better today. He has kept all his food down, barely coughed and is more active. His lung doctor thought his lungs sounded great and were clear. He was pleased with Jon Jon's progress and although Jon has lost about 1 1/2 pounds didn't seem to concerned. He still feels like Jon needs to keep the diagnosis of asthma and chronic lung disease. He felt as time went by, Jon Jon may be less affected by the irritants that cause his asthma to act up. As for the chronic lung disease - most kids tend to "outgrow" that one by the time they are six. It is their ability to do well with each sickness and not get pneumonias; so far Jon Jon has been doing well. The only way to truly know where we stand with Jon's lungs would be to do a test that requires blowing and following instructions and Jon Jon just isn't there yet developmentally. All in all though, today was a good day and I was pleased with the doctors report. So glad He is faithful, Renee UPDATE: 2-22-04 Just wanted to up date you on my little man. The meds the doc gave to him to control his upset stomach only made it worse. We stopped giving it to him and he actually seems to be doing a bit better - keeping a bit more of his food down everyday. As for the coughing - still not much change, a very wet cough that gets worse as the day goes on. He does seem to be in better spirits as he actually played a bit today with a few of his toys. We have a busy week ahead of us as he has a pediatrician, pulmonolgy and gastroenterolgy appointments. Also an appointment to be refitted for his shoe inserts. Also, if Jon Jon is up to it we will also try to keep his 12, normally scheduled therapy appointments! Be Blessed Abundantly, Renee UPDATE: 2-19-04 I took Jon to the doctors today and he has acute bronchitis and his ear is still infected! The doc gave me some anti-biotics - one we haven't tried yet and some phenergan for his vomiting. He said Jon was a little bit wheezy in his chest - but he didn't seem concerned?! I'm concerned - wheezy is never good for Jon. Right now I am so tired I really can't think straight. Renee UPDATE: 2-17-04 Please lift Jon Jon up to the Lord as He leads. Jon Jon has not been well since early Friday morning - a nasty, wet cough. We took him to the doctors today and he has an ear infection and an upper respiratory infection. Jon Jon never does well with anti-biotics - mostly as all have some form of red dye in them and he can't take them or they do nothing for him. We opted for a rocephin shot - which to say the least did not make Jon happy - but it should clear up his ear infection quickly. Since we got home Jon has cough non stop which is extremely irritating for him and it has also produced quite a bit of mucous which he has a VERY difficult time getting up. I know his little throat is raw - and since he still takes nothing by mouth - there is no way to sooth his little throat. He has also spiked a fever of 100.4; he is feeling lousy...I have held him almost all afternoon. Please pray that this clears up quickly and that he (and I) will be able to get some rest and also that this does not turn into something else as Jon Jon is still very susceptible and we do not want to end up in the hospital for several days... Be Blessed Abundantly, Renee UPDATE: 1-26-04 How disappointing. Jon Jon was to be sedated today for an ERG and EUA (electro retinal gram and eye exam). Unfortunately, it took one and one half doses of the meds to finally knock him out and about 1 hour before he was sedated enough to lie down. We got him all hooked up to the electrodes and placed the machine over his head. The tech then proceeded with the test which requires her to open Jon's eyes. Yeah right - any one that knows Jon knows he HATES his face being touched especially his eyes and mouth. He ended up waking up screaming saying "I done". When he got up, he bumped his head on the machine and in a frenzy ripped the electrodes off, the pulse ox and dug at his face. So we ended up leaving with one drugged up little boy. Even after a 45 minute drive home - it took an additional 2 1/2 hours before he was stable enough to walk. As for the tests - they are on hold as anesthesia can not work in the neurology lab and neurology's machines are not mobile enough to take to the OR. So as far as his eyes are concerned - we will have to wait till another time. On a VERY positive note - I really believe Jon may finally getting an idea of what "hungry" means. He has been showing some very SMALL signs of interest in food - mainly salt and vinegar chips and iced oatmeal cookies...he would basically hold them, put them near his mouth and MAYBE lick them. We have been to this point before - so we take it in stride. However, since he has had nothing in his tube since last night because of being sedated, he seemed as if he was "hungry" this morning. He kept asking for a chip and cookie. On the way home from the hospital we stopped to get fries - and Jon held and mouthed four of them. When we got home he asked for a cookie while I was feeding him through his tube - he actually BIT the cookie and allowed it to dissolve in his mouth!!!! YIPPEE... UPDATE: 1-24-04 It's been a bit since I have sent an update on my favorite little man... I praise God that he has been healthy for about the past 2 months... Jon Jon goes for an exam under anesthesia on Monday morning at Children's Hospital. He hasn't been sedated in a bit - and there is always cause for concern - but I know he will be okay. The ophthalmologist continues to show concern regarding Jon Jon's vision. Jon will be getting an electro retinal gram that will show us if the vision loss is due to the retinal detachment or if there is something else going on. We will also find out if Jon's vision has remained the same or gotten worse and be able to check the increase pressure in the eye. If all goes well we should be in and out in about 2 - 3 hours. These exams are hard on Jon as the drug they use to sedate him does not agree with him and it effects his mood terribly and takes a while to work. Last time we used this medication it took way more than the normal does to get him sedated and took us about 1 1/2 hours to get him down - whew - we were both worn out. Other than that Jon Jon is doing remarkably well - hitting more and more milestones everyday and being sure to remind me daily he is ALL boy....found him IN the toilet playing, standing ON my desk trying to get a puzzle, found him in his crib (still have no idea how he got in there!), and just getting into more trouble everyday. It is so hard to discipline when these little "incidents" are milestone markers - and for me miracles (as we were told Jon Jon would never walk or have any thing but mush for brains - HA). It is also hard to get after him as he is so darn cute and I am usually laughing my head off when I find him in one of his little predicaments! So sorry to be long winded - if the Lord leads pray that Monday mornings appointment would go well and the doctor will find what he needs to find.... Be Blessed Abundantly, Renee UPDATE: 12-20-03 Logan - the little one I have in my home, does have chicken pox and he is loaded. We had to take him to the emergency room today as he has them all in and around his mouth and is struggling with eating and drinking. They gave me some medicine - but so far it has done nothing. He is absolutely miserable and has not stopped moaning and crying yet today. As for the "future" of these little ones - it looks like Logan will go home the 30th and Landon - the little one still in the NICU will be placed in a separate home because of Logan having the chicken pox. The birth parents were given some directives and there is another court date on the 30th in which they may very well be released back to their parents. I ask that you pray for both Logan and Landon - that God would protect them and keep them safe, that their parents would do what they need to do for these precious lambs. I also ask that you pray for me and our family as it is a small task to take care of these little ones - but when they are so sick it just kicks it up a notch. Also if you would please pray that Jon Jon will NOT get the chicken pox, in Jesus' name. My heart is sad that Landon will not be here and that Logan will be going home - but I know that God always knows the big picture and I am ever so humbled to do this small service for His littlest lambs.... Renee UPDATE: 12-19-03 Oh my goodness as if it is not one thing it is another - the little one we had placed in our home Monday has the chicken pox!!! - He is loaded and running a fever - I apologize to those that had the chance to meet him and may have been exposed - We have all had the chicken pox and Jon Jon had the vaccine - though he can still get them - please believe with me that Jon Jon will not get them and that the little one we have will get better soon. His brother may be released Monday - but would not be able to come here because of his older brother being sick - I am so sad. Also - the county they came from has some snow and they may postpone court again.... Renee UPDATE: 12-18-03 Friends and Family - As you know we added a member to our crew the beginning of this week. He is adjusting some and so are we. I would like you to keep him and his brother in your prayers as there is a court date tomorrow and children's services is hitting a wall with convincing those in authority about the condition of these children. It is obvious that the one I have in my home has not received any care - the back of his head is flat, he has NO motor skills, makes no eye contact, can not roll over, sit or feed himself. He "moans" continually and does not appreciate all the "stimulus" he is getting here. We are being sure to change his position every 45 minutes to be sure he is not in the same position to long and he is getting irritated. (He needs this - but has not received it and it is making his unused, stiff muscles very soar). I don't want to give to much information - however I know God knows and I want you to agree with me that God will go before the judge and His plan will be carried out in the life of these children.... Renee and the ever expanding Zoo-Crew UPDATE: 11-22-03 Please keep Jon Jon in your prayers - he is not well again. He was sick at the beginning of October and his "cold" lasted over 2 weeks. He had about ten days of feeling a bit better when he got sick again; and sick enough to end up in the ER. His cough and fever has gone away after 2 weeks and he has been feeling a bit better. Unfortunately, the last two nights he had a wet cough and this morning he is still sleeping (it is after 9 - Jon Jon gets up at 7:30!), and his nose is crusted over with green drainage!! This has been such a hard time for Jon as he can not seem to get well, and his little system hasn't had a chance to recuperate since October. I will keep you posted. Be Blessed Abundantly, Renee New Picture UPDATE: 11-14-03 Above are two current pictures of our children. Thank you for your prayers. UPDATE: 10-31-03 Just wanted to let you know that we got home in the wee hours of the morning. Jon does not have the flu nor pneumonia - yet he is VERY sick. His oxygen levels were only 92 and Jon does well to be at 95-96. He is still struggling with breathing and a very dry cough. His fever has been up and down all night. We are to continue observation and keep the docs posted. --------------- I am taking Jon Jon to the hospital - he has a fever ranging from 102 to 104.8 and is having a hard time with breathing.... Renee UPDATE: 10-30-03 Jon Jon is not much better today. His fever topped out at 102.8 last night which is very high for him. He had a rough night. This morning he seemed his old self and his fever was down and he wasn't coughing - but by early afternoon his fever spiked again and he was coughing and vomiting. His pulmonologist called him in some anti-biotics and zyrtec. I am to watch him carefully for dehydration and breathing (he is already struggling with his breathing). Rilea has a doctor appointment at 9 tomorrow so if Jon can hold out till then I can get his lungs checked to rule out pneumonia. Please continue to lift Jon Jon up - he has been through so much. Be Blessed Abundantly, Renee **** Wanted to give you a praise report on Jon and also ask for prayer. Jon Jon is still not taking anything by mouth except for the occasional "tiny sip" of water. We have, however been able to find some foods that he is not allergic to and have been blending them to make a homemade "formula" - he is doing much better on this diet. His reflux has stopped, unless we give him too much volume or he is not well. He gained one pound in a 4 week period. He is making great strides in many areas. Although almost 3 1/2 he is at a 20 - 28 month level in development - he has made the greatest strides in the area of speech! Although he is still not "communicating" on a regular basis he is gaining more and more words and understanding their meaning. Jon Jon has a love for life and his progress blesses us every day. As for my prayer request. Jon Jon is not well again. He has 100 - 101 fever, which is very high for him - his baseline is 96.6, he also has a wet cough. He just got over being sick a bit over 10 days ago. He was on a round of antibiotics, a Rocephin shot and then 8 days of steroids. The lung doctor said that if Jon Jon got another cold soon after the one he had, especially with a cough that he would be concerned and would want to change Jon's medications and treat his lung issues more aggressively. Jon Jon has been off breathing treatments for a LONG time and his lungs have looked good. However this type of cold - and having two of them so close is of great concern. I will be observing Jon tomorrow to see if he gets any better - if not we will end up at the Pulmonologist and see what he says. Jon Jon's little body - although it looks healthy to most - is very worn out - it doesn't take very much and he gets sick, and when he gets sick, he really gets sick. We are usually homebound this time of year in an effort to protect Jon - this is the first year in 3 1/2 years that we are attempting to live life "normally" ~ attend church, go grocery shopping, run errands. But this is the 2nd time Jon has been sick in less than a 4 week period. I am not sure we will be able to continue and may be back on homebound. Please pray that the Lord would make Jon Jon's body stronger and that we would have an uneventful fall/winter/spring. Be Blessed Abundantly, Renee UPDATE: 9-14-03 Okay, as much as I would like to not make a big deal out of this - I just need to share. My son Jon Jon, who has taken NOTHING by mouth in over a year, sat here with me tonight and let water drip from a sippy cup into his mouth and swallowed most of it!!!! Granted it was barely an ounce of water and we have been working diligently in trying to get him over his HUGE oral aversion - but it is a step in the right direction. He has also been holding food in his hands for 10 to 30 minutes and allowing his nurse and therapist to "squirt" pudding from a syringe into his mouth. He is also allowing all of his team members syringe water into his mouth... AMAZING!!! Please continue to press in for Jon - I just know he will eat by mouth someday!! Be Blessed Abundantly, Renee UPDATE: 9-03-03 So often I feel I post only when I need prayer and I need to be more conscientious of when we need to give glory! Jon Jon is doing well, getting over a bout of sinusitis - but doing well. We did have to add one medication back to his repertoire - back up to 10 meds. The med put back on board is for motility (to help push the food he receives through his system and to help with reflux)) - and although it is only 1.8cc, we have Jon Jon taking it by mouth 75% of the time! This is a huge deal for my son that has been totally g-tube dependent for so long. We also have seen a bit more interest in drink - Jon Jon has been telling us (on occasion) he would like a "rink" and has taken VERY small sips of water!! PLT! He is doing a new sensory-neural integration program called "listening therapy". It is "special" music listen to through a "special" headset. Since Jon Jon has been doing this therapy (1/2 hour twice a day, 7 days a week), we have seen a HUGE improvement in vocabulary and improvements in understanding, sleep pattern and food interests. Our speech therapist is now in the mindset that Jon is ready to have more therapy in the realm of eating and is pushing for a goal to have him eating in one month....I realize he will not be completely oral in a month - but moving in that direction has me excited....Prayers for Jon to get over his EXTREME oral aversion and to have a desire to receive his nutrition by mouth. We have also cut back the amount of nutrition he receives from canned formula and replaced a portion of it with "real baby food". The calories are less as Jon is still volume sensitive - but he has shown a HUGE improvement in reflux (MUCH less spitting up, vomiting and retching) - in fact it has just about dissipated! We are hoping with the "real food" in his belly his tummy can adjust to the digestive procedure and when he does burp, retch or vomit he will at least taste something other than canned, processed formula. As long as we can maintain his weight, we will be okay and will continue (slowly) to add more "real" food and decrease his formula. One more item...Jon Jon went to see his heart doctor recently and his aortic root has remained the same size - it has been the same size for the past 15 months!! The medication is working for now and when Jon is stronger the doctor wants to do a trial without the beta blocker to see if Jon's heart can maintain a normal growth pattern! I covet your continued prayers for my son, God has been so amazing and I know He who started a good work in Jon is able to complete it..... Be Blessed Abundantly, Renee UPDATE: 8-10-03 Just wanted to thank you all for your prayers as Jonathon seems to be doing much better. His face punching has drastically reduced, although not gone, it is much more tolerable. He is still having some problems with vomiting, but it is not as severe as it has been - although with Jon Jon it seems to be an up and down cycle. He is also sleeping much better and seems to be in much better spirits. UPDATE: 8-04-03 Please pray for Jon Jon as the Lord leads ~ Jon Jon had his tonsils and adenoids removed Wednesday and has been generally doing well considering. However he is having a terrible time with sleeping and vomiting. He apparently got off schedule and wants to nap very late in the day and then I can not get him down at night and then once he is down he is waking up several times a night screaming and punching his face. (The latter behavior is something we have been trying to get a grip on for a while now). He is also having a time with vomiting during or after his feeds. (Remember he is fed by tube - nothing by mouth.) I am sure this has to be very painful with the recent surgery - but I am at a loss as to how to help him. We having been dealing with this issue for 3 years and have yet to figure out what to do to alleviate it. Please pray that he will stop vomiting and that he will get some much needed rest and that we will be able to get him to stop punching his face (he currently has black and blue marks at his temples from punching himself where his glasses are). Be Blessed Abundantly, Renee UPDATE: 7-31-03 Just wanted to thank you all for your prayers and support - Jon Jon's T& A (tonsillectomy and adenoidectomy) went well. There were no apparent complications throughout the night and we are home. Jon Jon is in some pain and has not slept well. His feeds got off schedule and has also caused his bowel movements to get off schedule. As I type his (private duty) nurse is trying to keep him calm. We should have no problem keeping Jon hydrated as we can put it all in his tube but since he takes nothing by mouth there is no way to give him anything to sooth his throat.... I ask that you continue to pray for my little man and that God would grant him a speedy recovery, get the needed rest and get back on schedule with his bowel movements. Be Blessed Abundantly, Renee UPDATE: 7-29-03 Please be in pray for Jonathon (as the Lord leads), as he will be getting his tonsils and adenoids removed Wednesday morning. They doctor is scheduling the surgery for the morning and we already were told we will spend the night because of Jonathon's history. I am apprehensive as this will be the 3rd time he will be sedated this month alone. This operation will make over 42 procedures and operations my son has had since his birth 3 years ago. Some procedures have been easier than others, but the several operations he has have had have all been of concern because of his developmental delays complicated by his cardiac and lung issues. I am asking you to believe with me that the removal of his tonsils and adenoids will reduce the amount of retching and vomiting Jonathon suffers from and that it will decrease his hearing sensitivities and that it will put him on the path of desiring to eat by mouth. (His tonsils have been large and inflamed for a VERY long time and have been one of the obstacles in his oral intake). I appreciate all your prayers and want to encourage you that Jonathon is a trooper ~ he knows life no other way than the way he experiences it now. He has no idea that others do not have their days filled with therapies, orthotics, poking, prodding, medicines and being pushed to their potential (and then some). He is a great little fellow that is here to amaze you and show you what God's grace and mercy is all about... Be Blessed Abundantly, Renee