Friday, August 17, 2012

New CPAP/Monitor

Jordyn got a new smaller mask for her CPAP machine this morning that we are hoping is going to
be alot better for Jordyn. The amount of drool that she is producing at night is dangerous. Someone messed with her video monitor that we use to watch her while she is in her crib and finally broke it. It has been on its last leg for about a year because the nurses are messing with it trying to get a good picture and finally it died. I need to get a new one ASAP because the nurses and I can not see her while she is in another room that we are not in. Anything can happen and if we cant see her it can be very dangerous. If anyone has one that they are not using please contact me. This video monitor is one that has a picture/screen that you can see the child through the screen. It has a camera that goes in the room where she is at. Wish us luck with the new CPAP.
GAPP ( GA medicaide ) denied the doctors request to give Jordyn 24\7 nursing care. Two doctors wrote letters to the state stating that they wanted a nurse here in the home 24\7 to watch Jordyn and adjust the mask and suction her drool and to watch her and take care of her all day because of all of her machines and problems. It makes me feel helpless that I am unable to tend to her all day and night but I can't stay up all night, stay up all day, go to school, and take care of my other two children and the home. I have learned to handle the things I can and the things that I can't dont stress over it! Some day all this will be over and I will look back and laugh at the times I feel asleep in a chair or my car. It will be all worth it to see my angle walk, talk, live on her own and take care of herself. It doesn't hurt to have HOPE. MOM

Wednesday, August 15, 2012

It has been an amazing two weeks with everything that has been going on. They news paper did a story on Jordyn and the WRCB also came out and did a TV story on Jordyn. This was great to see and know that her case is being made aware of.
We went to Atlanta for the MRI and then went to the doctor. He didn't have great new but it wasnt that bad. On Jordyns spine at the bottom she has a ring, like a rubberband at the bottom, that is too tight so when they go in to do her back surgery next month they will do the surgery to cut that at the same time. She has been feeling better and acting better.
We had a family come out and fix a door knob, door, and the tube. They also brought her a new high chair which she loves and can finally sit up straight in it.
It makes me very upset that she has to have all these surgeries and she has to go through so much but time will make everything worth it. Her birthday was pretty good and I made sure she got a smash cake. She didnt eat much of it and only rubbed her hands in it mainly but she did play a little in it. I had hoped that this year since she wasnt in the hospital that she would dig into it but she didnt. It really hurt me to see that she couldn't eat it like a regular child her age. melissa

Tuesday, August 7, 2012

Jordyn's appointment got canceled today for her mask fitting. Her surgery has also been changed to September 26,2012. I am not looking forward to this at all. She is feeling a little better but still has some stuff in her lungs and her throat. We are continuing to give her breathing treatments in hopes that she doesn't have to go to the hospital and doesn't get pneumonia.
Her article did run in the paper and online today with a beautiful picture of our family. You can visit the site at www.catwalkchatt.com. Someone has already called us today and came to look at the AC and plans to come back and work on somethings at the house. Him and his friend visited with Jordyn, she sang a song to them, and they donated 100.00 to her. As I cried to these men with such great appreciation all I could think is that there are some really giving, loving, and caring people in this world. He called back and said he was going to try to get everyone involved to do a motorcycle run for Jordyn. What a wonderful day with alot of wonderful people out in this world. Thank you to everyone for everything they have done and continue to do. Mom

Saturday, August 4, 2012

A Bad Day for Jordyn

After having a long night getting up and down with Jordyn we finally got up this morning and noticed Jordyn wasn't feeling well. She is coughing, watery eyes, and has the look of I don't feel good. She is not as verbal or active, which is the same way she did two months ago when she got phenomena.It makes me so sad to see her face and watch her cry. I am going to give her breathing treatments today and hope that maybe I can stop it before it gets to bad. If she gets it again, that will be twice in two months and which means her lungs are having a hard time due to her back. I am so tired but I just make myself keep going. I wish she could be like other kids and go outside and play, enjoy life , instead she is stuck inside a house laying on a blanket on the floor or sitting in her wheelchair. To watch this daily is so depressing but I know things will get better one day.

Friday, August 3, 2012

Jordyn July 2012

Jordyn just had theraphy this morning and did great. She is really learning to say alot of words and they are working on making choices. Her 3rd birthday countdown is down to 9 days and we will share lots of pictures. I see alot of people are visiting her site and we are thankful for the awareness and support. If I can figure out how to upload a video of Jordyn I will. She will go next week for her fitting of the oxygen mask. She will ware this about 14 hours a day which will be very hard because it will need adjusting all the time. Someone called yesterday and asked if Jordyns story was a scam. If anyone doesnt believe this is real please feel free to contact me and come to our home to visit Jordyn. We would love for visitors to come and meet and see Jordyn. She doesnt get out of the house much so please feel free to come. My email address where you can contact me to meet is melissa_albert97@yahoo.com and my cell number is 423-994-3639. You can view Jordyns Facebook at Jordyn Barker business and mine ( mommy) is also linked to hers which is Melissa Buxton Barker, you can see it on Jordyns likes. We hope everyone has a great day, Melissa (Mom to Jordyn).

Thursday, August 2, 2012

Someone actually asked me if Jordyns story was a scam. If they met her they would know. She is so precious and wonderful and everyone that knows her is blessed!
Count down to Jordyns third Birthday. Some said she wouldnt make it this far, well she did. She will make it to 70... I am so proud only 10 days left baby Jordyn. I am going to get her a cake to dive into... maybe this year she will actually do it.. She also has an appt next week to get fitted for her mask, CPAP that she will have to ware 13 to 14 hours per day. UGH but better than a trach. I hope decide against it.
I just received a letter from social security saying she will not get a disability check for june or july because I have I went 7 weeks until my unemployment check came well because they paid me the back pay of 7 weeks in the month of June they said my Bank statement shows I had more than 2000.00 in the bank In June. But what they are not taking account for is 937.00 went to pay the past house pay
ments. If i cant get this fixed then Jordyn will lose her medicaid, her disability check, and her nurses. I am so so so upset. If its not one thing its another. Losing my job really has hurt our family so bad and If i lose all of these things then I dont know what I will do. I dont understand how they can take my cking info and use what I had in there for a week to basis my wages? I only have unemployment nothing else so how can they do this to us?
We are running out of room. We have medical equipment ontop of each other. There is stuff every where. Need somewhere to put all this or some shelfs to hang stuff on. I need a Room designer. Lol like that will happen. If anyone has a high chair they dont use let me know how much you want for it. Jordyn's which use to be Hannahs is broke. Someone broke it and then tied a belt to it in the back, So she lays back instead of sitting in it. I am waiting on it to hit the ground and finish breaking.

Tuesday, July 31, 2012

The disability office just cancled Jordyns disability which means she doesnt get her check, her state insurance, and her nurses will be canceled. I am going now to appeal but it can take months to get anything done. 

Monday, July 30, 2012

Trying to take a lot of pics before surgery because we will be home bound for years mostly. She has to go back every 6 months to have surgery again on her back for years. I was saving my vacation time from my job to take her out of town for a trip to the beach since she has never been anywhere and wont be able to after surgery. I lost my job so that's not going to happen. I am hoping to take her to somewhere local to do something before surgery. Bless her. This will be the hardest surgery she will have had. She will lose most of her mobility because she will have a body cast again. She is so pleasant and I hate it that she has to have all these problems and surgeries. I pray to God every night to heal her. One day he will make our wish come true. Jordyn will get better and our lives will turn around. One day I will be able to breath again and sleep at night. I admire Jordyns strength.


Jordyn failed her sleep study and stops breathing 20 times per hour during her sleep so she has to have oxygen when she sleeps. As I mentioned before, I lost my job and we do not have any insurance at the moment and are waiting on medicaid to approve it. Since she is so small, a special mask has to be ordered for her to wear while she sleeps. Over the past six months, Jordyn has only gained about one pound. She has to have an uncommon type of back surgery as well. So far there have only been about 80 cases so the definite outcome is not known. She will be cut from the top to bottom with rods placed on both sides and then bolts will be attached to her rib cage and a box put in the middle. They will go in every six months and do surgery again and readjust the box for growth. She has a 62% curvature and if she doesn't have the surgery, she may die because of her lungs will collapse. We were also informed by her kidney doctor that she will always have her hole to urinate from the right below her belly button. If she gets out of diapers, she will be able to put it back the way it was and would have to cath her every three hours. 


Jordyn still has seizures and we are still in need of a dog. Now, the dog would need to do a lot more than just look for seizures. He would need to be able to help her get things, open doors, close doors, and get the phone. These type of dogs are amazing. I know that the sate will cancel my hours shortly after her back surgery so the dog would be greatly helpful. On the positive side, her therapy is doing really good and she is saying a lot more words. If you repeat the word she can almost say anything that is 5 to 6 letters longs. She sings and trys to dance. She can almost pull herself up from laying on a pillow. She can stand at the couch with assistance but no walking or crawling. She is so wonderful and a delight to be around. We are looking for another crib t put in the living room for the nurses at night after surgery so she has somewhere to sleep. It is just to hard to take the crib in my room down twice a day and put it back up. 


Jordyns mri in atlanta is AUGUST 13th , the day after her 3rd birthday. The fluid on her brain seems to be doing good from the measurements we take. They did have to add another seizure medicine because she was having to many. We are down to one every 3 months now. Yes Jordyn will make it to 3. I am so proud of her and cant wait to spend that special birthday with her. August 12th,2009 God gave me a wonderful miracle. I only hope I can give back to her what she has given to us. Only two weeks away!!! I wished I could put her feet in the sand at the beach for her bday. She deserves it. She never cries or complains like most adults would. 


My job hunt is still going. I haven't been accepted to the college to get student loans or grants because of my driver's license says TN. I do not know if I will get funding in time for tuition to be paid so I may have to wait until January to go to college. I have applied to over 240 jobs with little response back. I 


Jordyn got to come outside to ride in her wagon but she can only ride a short ride on the pavement because there is no where to play in the yard because its all hills and no level ground but at least she is outside instead of laying on the floor..

Thursday, September 8, 2011

Quick Update....

Jordyn is still in the picu. No more seizures yet but doctors believes this is just how Jordyn is gonna be. We just have to get oxygen on her quickly and give emergency med.   - Melissa

Update from Family

Jordyn was taken to the hospital last night in an ambulance. She had another seizure. While she was at the hospital, she had one more seizure. This is a very tough time for the family and really needs our help. If any way possible, please help us and donate. You can donate at her blog site (http://jordynslove.blogspot.com). The donations will go towards the purchase of a seizure dog as well as other necessities Jordyn will need.

Friday, August 26, 2011

Update of jordyn


Cast off now rhino cruiser

Jordyns cast was removed a couple weeks ago but now she is in a rhino cruiser. We have ordered a new pair of leg braces and shoes. Jordyn had three seizures in one day and had to go to the hospital. She was admitted to icu and sent home two days later. We found out she had a very bad kidney infection yet again which lowered her seizure level. All is well now and we are working on getting jordyn to stand and walk. She babbles alot and trys to make words. She turned 2 years old while in the hospital on the 12th but we had cake anyway. Thanks for all the prayers an wishes.

Tuesday, May 3, 2011

body cast

Jordyn goes for her body cast on friday at 6am in Atlanta childrens hospital. We will be discharged if the nursing company has a nurse waiting on us at home. We survived the storms in Ringgold and are doing just fine. Our power was the main problem we had which it is back on now. Jordyn got her glasses and has already scratched them and we are waiting on a new pair.. She is really getting vocal and doing alot of babling. This body cast should be an extremely hard hurdle. Thanks for all the prayers, concerns, calls and offers... Melissa

Thursday, April 14, 2011

body cast

jordyns cast has been postponed due to her getting sick. she started running a high fever yesterday. i took her to the doctor and they said it is more than likely a virus. with her ha ing a fever she couldnt be put to sleep today. we are waiting to reschedule the cast. we also had someone contact us about publishing jordyns story in the paper. the want get the story out there so other people can learn that there is help out there and other people can get nursing assistance if needed. our nursing hours got approved for much higher first two weeks she will pretty much has twenty four seven care then on the third week it will be eighty four hours per week. this is going to help out alot. this body cast isgoing to be very hard for her to deal with. she has to be rotated every two hours and with summer coming i can only imagine how uncomfortable it will be, wish us luck, thanks for the help, melissa

Monday, April 4, 2011

Glasses April 2011

jordyn just left the doctors office and we found out her eyes are horrible. she has to have glasses. her eyes are crossed and she sees double and blurred. she will get her glasses and if it doesnt help she will need eye surgery. she also goes for her body cast next week. hopefully this will all work. thanks for all the prayers and advise, melissa

Saturday, March 26, 2011

March 2011

With some new teeth coming in things are starting to look better for Jordyn. She will go for her back cast on the 14th of April, We are all not looking foward to this. She will be in a non-removable body cast from neck to knee. Every 6 weeks she will have a new one put on, so I guess she will get a bath only every 6 weeks, this should be our greatest task yet. We are hoping to have 24/7 nursing care for the first week and then 110 hours after that if the state approves it, if not we will only have our 52 hours of nursing care per week. I can only imagine what kind of uncomfortable this is going to be. She will have to go to Atlanta Childrens Hospital and be put to sleep for this cast. I am Patiently waiting and hating this alot but I must trust that the surgeon knows best. Lets hope this works and her back doesnt get worse! Mom

Tuesday, March 1, 2011

Jordyns release

Jordyn was released friday from the hospital. She was sent home on some new meds along with rescue meds. Her fever has dropped and we havent seen it since we left. She seems to be doing pretty good but only a cough right now. We were advised about getting a service dog that will watch her at all times, especially while I sleep, and come get me if she has a seizure. If anyone knows anything about this please advise. I have been told they are available and are great for children with seizures. We are waiting to see if anymore seizures are going to occur. Her body cast will be put on April 14th. This is a full, head to knee, body cast that is not removable. We are dreading this so much. Jordyn weighs 22 pounds and after the cast will weigh over 50. Moving her around will be a task in its self. I will update as i know. Thank you to everyone for the prayers, concern, and time. It is wonderful to know that alot of people are praying for Jordyn. Melissa

Thursday, February 24, 2011

Update from Melissa

Jordyn has had a ruff year so far. She went to the back doctor in January and they wanted to place her in a body cast ( non removeable) for 3 month. While we waited for the surgery date to be made on that she went to the neo-surgeon. We found out that Jordyn has hydrocepholois and aguaductal stenious. What this means is she has extra fluid on her brain and a stem is messed up. We postponed her back cast and did her brain surgery on Thursday the 17th. During her surgery they found a cyst on her brain and removed it.

Jordyn went home on Friday and seemed to be doing ok just in a little pain. Sunday night things started going ruff. Monday all day she fussed and Tuesday morning she began running a fever. I took her straight to the hospital and while in the ER she had a general tonic clonic seizure. This seizure lasted over 3 minutes, she foamed at the mouth and shook a lot. They didn’t know what was wrong with her and why she had the fever. At this point they couldn’t tell me if she was going to live. The doctors said they didn’t know if she had blood on her brain or what was going on. After a ct scan and a chest scan, they placed her in the PICU. At this point we still don’t have much information.

All test have come back ok but she still has the fever. They are considering letting her go home today but we are unsure. She has her back surgery for her back cast on april 14th. That’s pretty much all in a nut shell. It has been pretty scary for the last couple of days. Thanks for you concern, care and prayers.

Love,
Missy and Jordyn

Wednesday, February 23, 2011

Update from Melissa...

For everyone who is intersted, jordyn is still running fever and required meds to control. She is resting right now in regular room. Will update more as I know,

Update.

She is PICU at Erlanger (TC Thompson Children’s) and she had a good night according to Missy. I think they are moving her to a regular private room. CT was normal, Chest Xray was normal. I think they are just going to observe it for the next 24 hrs and see how she does.

Update on Jordyn..

We are going to begin updating this site once again. Facebook has been updated over the past few months but understand some people still want to make donations and do not have facebook accounts. Below is going to be an update over the past few months. These posts are pulled from facebook... 

- Feb 15th - Jordyn is to have brain surgery this thursday if she is not sick. She hasn't felt good the last two days.

- Feb 16th - Jorydn's surgery is at 10AM tomorrow morning. We have to be there at 8AM. We are at the pediatric doctor now to make sure she is not sick.

- Feb 17th - At hospital waiting to go back. Poor jordyn she has had to much to have to endure. But yet she still smiles. this is hard. Watcher her go back will b worse.

- Feb 17th - Update, Jordyn is now in surgery, did ok getting to sleep. Will go to picu when done. So upset that I wont be able to sleep with her.

- Feb 17th - They found a cyst on her brain that was blocking her spinal fluid. Surgery went well and they are closing her up. The doctors are pleased. Waiting to go back and see her. She will be in the picu all night.

- Feb 18th - Jordyn is home, sleeping so sound, I am proud of her.

- Feb 20th - Sitting with Jordyn, she seems to be getting back to her old self... she wants to scratch her head

- Feb 22nd - What a day, Jordyn had a fever, took her to hospital, she had a very bad seizure. We are sitting back in the picu, this is the worse day of my life.

Thursday, December 23, 2010

CHRISTMAS 2010

Jordyn has had a pretty good month overall. She is learning how to sit up on her own and brace herself a little. We did find out through a cat scan that she does have to much fluid in her brain and she will have to have a shunt put in next month. She had her vescostimy surgery in November and has recovered quit well. I took her and Hannah to see Santa and Jordyn went through the process but at the end started screaming. She doesnt like alot of noise and people. Her seizures have been able to be controlled with her new medicine. She looks at the lights on the tree and gives a big smile. Thanks to everyone who continues to follow Jordyns development and progress. We hope everyone has a safe and Happy Holiday. Melissa, Jordyn, Hannah, and Courtney

Thursday, October 28, 2010

Another Surgery

Jordyn has kept her kidney infection and hasnt been able to get rid of it this last time. Her kidney doctor has scheduled surgery for November 11th. We will be at vanderbilt childrens hospital for about 2 days. She is going to have a cystoscopy and a vesicostomy. What this means is they are going to make a whole below her belly button and attach her bladder to that whole. She will urinate out of this whole continuously. I havent been able to talk to the doctor yet but it looks like this is the only option left. She was diagnosed as being still at a 5 months old level ( developementally) and a 3 months old level socially. Jordyn has been working really hard with therpy (3 times a week) and can sit on her own for about 1 to 2 minutes. This is a wonderful milestone for her. Jordyn is going to go riding in the wagon on halloween but I dont know what she is going to be dressed as. Her pictures will be uploaded on facebook. I hope to see everyone for the holidays when we go to moms house in Nashville. Thanks for all the prayers and please have Jordyn in your thoughts on the 11th around 2:15.. Thanks Melissa

Wednesday, October 13, 2010

October 2010

Another trip to the Hospital ( which I knew was coming ahead of time), Jordyn has another Kidney infection. After complaining they are going to go ahead and do the surgery sooner. We still dont know the date but the doctor wants to sit down with me and explain the surgery before scheduling it. We are going to meet with him on the 5th of November, which is Hannahs 3 birthday. Jordyn also got placed on an apenia monitor because the last two times she has been put to sleep at the hospital she has had diffeculty breathing. The monitor is just to watch and see if she does stop breathing anytime while asleep. Jordyn is having therpy 3 times a week and I can see the progress. She can sit on her own for a little bit and she is using her arms to hold herself a little. They brought us a chair for her to sit in and are considering ordering a wheelchair for stability. She still doesnt sleep all night and isnt feeling good right now. She still weighs 16 pounds and cant seem to get higher. She gets an infection at least once a month, doesnt eat for about a week ( except tube feeds) and loses weight, the rest of the month she is gaining what she lost. All in all things are still about the same. Her eye surgery went well. Thanks Melissa

Thursday, September 30, 2010

We are not alone

After searching on the internet for Jordyns syndrome it seems that we are not alone. I have found a website under microdeletion 17th and found a little girl by the name of emily. This website directed me to another site which has 5 children from around the world with this condition. The website is chromo17europe.webs.com and emily17q.webs.com/ourjourney.htm. Here you will find alot of information about what Jordyn has and how rare this syndrome is. They offer alot of support but it is in Europe.
Jordyn to the Kidney doctor and he said her bladder is half the size of what it should be. He placed her on two new meds and will do another test in November. He is going to schedule surgery for her kidney reflux in november as well. Jordyn still weighs 16pounds but she is becoming a social bug. She smiles alot, grins, and laughs. She has eye surgery on the 8th of October to clear her clogged tear ducks. Jordyn is truly wonderful to be around and I look foward to what she will do in the future. Therapist are working with her 3 times a week and our goal is for Jordyn to sit up with no help. As we head into her second Halloween, Thanksgiving, and Christmas I hope Jordyn will continue to meet more milestones. Thanks for everything, Melissa

Thursday, September 9, 2010

September 2010

Jordyns first birthday went really good. Lots of people came and enjoyed seeing her. Jordyn is sick again and running a fever of 102. for 3 days. We have been to the hospital and doctors office several times. We are waiting on the cultures to find out what she exactly has. The doctor said yesterday that this problem is not going to be as easy as removing one of her kidneys. This problem is alot more than we think. She is supose to go to nashville on the 28th for testing on her bladder and kidney. She still can not sit on her own, crawl, walk, but she can roll over on one side. We have switched her formula to a " big girls" formula which is pedisure. With her central line removed she gets a regular bath which she hates. She is watching what we are doing and she is aware of what is going on. She knows when you take her in the bathroom and lay the towel down that its bath time, which she starts to cry. She knows when they rub alcohol on her legs that its time for a shot. This tells me that she knows more than we think. She may not be able to physically move but she is thinking. Her leg braces ( both sets) we not correct so we are waiting on the new ones to come in. I have posted her birthday pictures on my facebook for all to see. Her MRI didnt go to well but the end result was good and they said they will see us in a year. Her other back doctor will be reviewing her in janurary for surgery. We hope and pray right now for Jordyn to get better, sleep more, and begin to bare weight. Thank you to everyone for following Jordyns progress. Thanks Melissa

Monday, August 2, 2010

August 2010

Jordyn's birthday parties are around the corner. We are so excited for her. She has also started to have seizures. She is having an eeg on the 10th to find out what the doctors are going to do. Sitting back watching this is unbareable. She shakes her head and rolls her eyes in the back of her head. It is very upsetting because there is nothing I can do to help her. Please put Jordyn in your prayers. Prayers are needed right now more than ever. We have been blessed to make it as far as we have and I truly believe with the support and love that she has received has helped so much. Jordyn is a fighter and I can only hope and pray she continues to fight. We hope to see everyone at her parties. Thanks Melissa

Friday, July 9, 2010

July 2010

Jordyn is doing really good these days. She got another infection a couple weeks ago but she is over that. She has 4 cute little teeth and is eager to pull on objects. She loves to pull my hair and touch my face. Her therpy is going great but they are considering putiing braces on her legs because she wont bare weight on them. We are headed to atlanta monday to check the progress of her back and make sure its not growing too fast. She also heads back to the heart doctor next week for a ekg and eeg. She will be a year old next month and we are so blessed she has made such progress. She lost some weight when she was sick so she is back to weighing 15pounds 2 oz, but she is 27 inches long. She is in 6 months clothes but can ware some 9 months size. I seemed to have gotten her birthday party dates wrong so I am correcting it know. Her birthday party in Nashville is going to be on the 7th at my moms house and her party in Ringgold is going to be the 14th in Ringgold at a center. We hope that everyone can attend. I will be mailing invitations ,that Nurse Angela made by hand for Jordyn, out next week. Thanks to all the people who follow Jordyn and Keep up with how she is doing. Thanks to everyone for your prayers, thoughts, concerns, and help. I have started a scrap book thanks to a wonderful couple, and it has Jordyns birth until current. Jordyn seems to be alot happier and more content, Just a little spoiled i would say. Will update as soon as I have more results, thanks Melissa

Monday, June 7, 2010

June 2010

Jordyn is weighing 15 pounds 1 oz. She is doing really good rolling over. She is eatting orally 3 times a day about 2 to 3 oz a time. This has been a ruff experience. I have started a scrapbook for her that is going to be from birth to current and then will carry foward. Jordyn is making alot of new noises her lately and it sounds so sweet. I am planning two 1st birthday partys for her, one is in nashville on August 7th in Nashville and August 14th in Chattanooga/Ringgold. We are hand making the invitations to mail out. I will need everyones address that wants to attend. We are going to have a hugh blowout. Email me at melissa_albert97@yahoo.com if you would like to come. We welcome everyone. I also do alot more updates on Jordyns facebook if you want you can check that for weekly updates, or come to my facebook page which is under Melissa Barker and you can get updates there to and write us there. We are so happy with Jordyn and her progress. She has really progressed and with the therapy we will be moving right along. We are in the stage of trying to get her to sit up on her own.. We will get there.. Things are really great with the Hannah and Courtney. Hope to see you all at the party...Melissa and Jordyn..

Thursday, May 6, 2010

Jordyns Heart

After a 3 hr office visit with the doctor, after an eco, xray, and a ekg we find out that Jordyn has premature heart beats. This means that her heart basically skips a beat. In a minute her heart skips 4 to 5 times. We are going back to the doctor monday to check again and see what the surgeon says. The rest of her heart is good. We may have another at home monitor. We have adjusted her feeds and she gets 8 hours off and two mouth feeds. Other than that things are going pretty good with Jordyn. She is rolling over now from her stomach to her back. She is 24 inches long and 13 pounds 14 oz. We are inching up there month by month. Great job
jordyn...Lots of love from our house. Thanks to all who follow Jordyn..

Friday, April 23, 2010

what a month we have had.. Jordyn is not taking the bottle so well so we have moved on to cup feeding. This is where she drinks from a regular cup. This is going excellent along with the baby food. We have had to stop all feeds as of yesterday because Jordyn is having a ruff week. We have taken her to the doctor and we are waiting on cultures to grow so we will know soon. She is really fussy and not sleeping. Her G-tube mikey button came out this morning and that wasnt to
fun. Hannah got evulated by babies cant wait and she is doing just fine. She tested above average
on her test so we are really pleased. We are waiting on the kidney doctor to call us about Jordyns kidneys as well. She has had a couple of days in the last week where she hasnt had any urine output in over 7 hours. So we have lots of issues right now but we are holding our own.. thanks for the support and prayers.. Lots of thanks for our nurses...

Monday, April 5, 2010

Eatting Mash Potatoes

What a great Easter we had. Friends from Ohio that have a medically and mentally handicap
child came down to visit Jordyn. We went out to the park, decorated eggs, hunted eggs and lots more. I will upload pictures when i can. I have some great news---- Jordyn ate Mash potatoes. She took about 2 teaspoon fulls of them and did really good. I was so amazed at how quick she picked up the concept. Hannah went to the potty in the potty like a big girl this weekend too. Jordyn is still on her IV meds but doing much better. The nurse Angela that is with her every day just about is really doing wonderful work with her. Angela has her grasping things, putting her pacifer in and out of her mouth, and playing with her toys a little bit. We are so thankful for our nurses that work with Jordyn. Angela really goes out of her way to help with Jordyn and Help me! Courtney is gone for the week for spring break so its just Hannah, Jordyn, and Me. I am wondering if I will surive. I only got 4 hours last night of sleep so its not looking positive. Thanks to everyone Melissa

Wednesday, March 31, 2010

Jordyn gets to start to eat

Jordyn has had a great week. We went to the doctor and after a swallow study that she will have in two weeks she will begin feeding therpy by mouth. She also grabbed a pacifer out of her mouth and then put it back in. She is still on IV Meds but she is doing pretty good.. we went to church last week and really enjoyed being out of the house. thanks for the contuined support and prayers

Friday, March 26, 2010

Jordyn has yet another kidney infection. She is receiving at home IV medication. She went to the genetics doctor today and found that she weighs 12pounds 15 oz. After the doctor reviewed her she has made the assumtion that Jordyn will be morderatly delayed. She feels that Jordyn will walk and talk but need to live with us for the rest of her life. She doesnt think Jordyn will drive or be dependent. I know that she will have a wonderful childhood and adult life. She seems to be feeling a little better but still fussy at times but we expect that. Thanks for all the prayers, concerns and phone calls.. Jordyn, Melissa, Courtney and Hannah

Thursday, March 25, 2010

Important Update!!

Jordyn is sick again for the second time in 3 weeks. She has a kidney infection and is running a fever. We are at home with IV Medication. The medicine is so strong that we have to do blood drawls to make sure that she is getting the right about in her blood system and not to much. Please pray for her. I actually got to take her to church sunday and we got to meet alot of great people. Jordyn goes to see the kidney doctor next month and then we will decide if another surgery is needed. Love Melissa, Jordyn, Hannah and Courtney

Wednesday, March 3, 2010

Update From Melissa!!!

 Just thought i would give ya’ll an update. Jordyn had to go back to the hospital sat the 27th for a fever of 103.5. Of course she has an infection in her kidneys. We were lucky and got to take her home on IV antibiotics because we still have the central line and we have nurses during the day. She would have had to stay in the hospital for 14 days and get the iv antibiotics but i worked it out so that we could do it at home... we went back to the pediatrician yesterday and they said that the culture came back and she can be taken of one of the antibiotics. She was on such a strong antibiotic Saturday and Sunday that we had to draw blood from her and take it to the lab Sunday to make sure her levels were ok. She seems to be acting a little better today. She ran a fever all weekend and was grumpy. It seems like as soon as something goes good we have a set back. Courtney and Hannah are good. Grandma is coming this weekend again because i have a company banquet to go to in Knoxville. Wow a night of no children I don’t know how to act. I will miss them. Jordyn is 23 inches long and weighs 12.8 pounds. We are getting on up there. She is getting fat because she is short... Alright bye again, Melissa Jordyn, Hannah, and court... Its snowing here too.  - Melissa

Tuesday, February 23, 2010

Jordyn laughs now.. she also smiles alot more... these are milestones we have been waiting for.. Thumbs up for Jordyn.

Update From Melissa!!!

"We went yesterday to atlanta to see the surgeon. He said her lungs have plenty of room to grow so we are going to wait until Jordyn is around 3 yrs old to do her back surgeries. He does want to rescan her in 4 months to make sure this is not an extremely progressive case though. she does have a bad case but she can wait and its better to let her get some growth and size to her before we put the rods in.. So as of right now no surgeries are planned. I am considering removing the central line. Are nurses have started and things are going really well. I am getting some rest.. Yeahhh... Jordyn is growing alot. She is 12 pounds now. We go tomorrow to change out her g-tube and get a new mickey button.. that should be real interesting"

Monday, February 8, 2010

update!!!!

Jordyn’s appointment with the spine surgeon went excellent. Everyone has a little fluid in their spinal canal and the only difference is Jordyn’s has a little more. It is considered dilated. There is nothing they want to do with it. 99% of the time nothing comes of it. She will have a MRI in 6 months to make sure then if nothing has grown she will go to once a year for MRI's just to monitor. We were so pleased to hear some good news. She weighs 11 pounds and is 22 1/2 inches long. She goes for her 6 months shots this Wednesday and surgery to remove the stents on the 18th. Medicaid wanted a new application of Jordyn so we are suppose to again find out this Wednesday if we get approved for our nurse. Prayers really work so please continue to pray and maybe we will get it. We had a great time with grandma and really enjoyed the relaxing and company. Lots of thanks for everyone.. Please continue to pray..

Wednesday, February 3, 2010

Benefit for Jordyn!!

Good Morning Everyone. During the very stressful time with Jorydn and her family, we are working very hard to help her family by continuing the efforts to raise money to help with many doctor bills. In today's economy everyone knows how difficult it can be to make payments to something when there are so many other things that are more important that come first. We have made it our priority to help Jordyn, Melissa, and the girls more than we have in the past. We are asking people to reach out and help us in a special way. Currently we are in the process of organizing a benefit concert for Jorydn. We already have a couple of local musicians who are commited to playing but we are in search of a venue as well as more artists. This is a perfect time for new artists to get their name out to the community and show support for a great cause. Venues that we have been looking at range in the 800 - 1200 dollar range. If you can help us and know of people who would want to play or a place where we can play for a small price, or free, please let us know soon. The estimated date for this benefit will be around the end of March on a Saturday night. Tickets will be cheap and as usual 100% of all donations will go to the family. Please help us and continue to pray for this amazing girl and family!!

Tuesday, February 2, 2010

Update From Melissa!!!!

"Grandma and I are going this Thursday to Atlanta for Jordyn’s MRI consult. I am extremely worried and scared but I hope and pray that everything will be ok. I know we are looking at least 4 back surgeries but I just don’t know how serious the spinal surgery is. We still have not been approved for our private nurse from Medicaid so days are really ruff. Some days for her are ok and some are bad along with nights.. Grandma is coming Wednesday to stay for a couple days and give me break. Jordyn’s g-tube area started to bleed Sunday. We are suppose to bring her into the doctor’s office this week and have them cut off the extra skin that has come out of the incision site. Once we get this nurse approved which we have been waiting 4 months for, things will be a lot easier on Jordyn and me. Courtney and Hannah are doing ok. We have very busy month for Jordyn. I will let everyone know what the results are as soon as I can. Surgery is planned for Feb. 18th for Jordyn’s stents to be removed. She will have the surgery at TC Thompson in Chattanooga. Thanks so much to everyone for the thoughts are prayers for Jordyn. We appreciate all the help, concern, and love. Melissa "

Wednesday, January 20, 2010

Update From Melissa!

Jordyn has surgery again on Feb. 18th in Chattanooga at TC Thompson hospital to have the stint removed in her kidneys. She should be in surgery for about 30 minutes. Please pray for her. She has had a lot of ruff days here lately. She seems to be in a lot of pain and has a lot of gas that is hard to get out because she can’t burp. We have to vent her to get some of the air out but we don’t ever get it all out there is no possible way. She is not resting well.

Everyone please pray hard and continue to pray for Jordyn and her family!

Tuesday, January 19, 2010

Jordyn has a neuro surgeon appointment February 4th to go over the MRI. Her feeds got increase to 33 per hour and she is going 4 hours without food during the day. Her weight dropped down but we are assuming thats from the surgery!  Keep praying!!!

Wednesday, January 13, 2010

Update!!!


Jordyn is doing ok.. we are waiting on the neurosurgeons to find out when and what parts she will having done on her back. We went to the doc this morning and her g-tube site looks really good. She has some more skin that has come up around the hole and we might have to have it removed again but they can do it in the office. She has started to reach out her hands..

Friday, January 8, 2010

GREAT NEWSS!!!

Jordyn was discharged late yesterday- just 1 day after surgery- she is doing fantastic. Some discomfort but that is to be expected with major surgery. She will have a post op check up today at 1 and then they will head to Chattanooga. She will have another CT in about a month to make sure everything is working like it should but Dr. Adams said she did great.

Wednesday, January 6, 2010

They are concerned about her trachea swelling and closing up. Just talked to the surgeon and they finishing up. She did fantastic as far as surgery. The anesthesiologist is trying to wake her slowly. Said she is not out of the woods yet but so far everything looks great.
Everyone please stop and pray. Jordyn is about to undergo her surgery. They are on their way to Vanderbilt now and have to be registered at 12:30. I will keep you updated as I can throughout the surgery.

Tuesday, January 5, 2010

I am just letting everyone know that the medical term for her surgery is pyelo-plasty on the left kidney. Please remember to pray for Jordyn!!! Surgery is this Thursday at Vandy.

Monday, January 4, 2010

Jordyn has surgery on Wednesday we have to be there at 12:30 and surgery is at 2:30. We will be in the 3rd floor waiting room. She has been real fussy these last two days and we are hoping she doesn’t have an infection. Her MRI results came back and they found another condition. She has been diagnosed with syringohydromyelia, which is fluid around the spine. This is a rare condition and her pediatrician has never had a case, so Ms Jordyn will be the first case. This is associated with her bad case of scoliosis. This will require another surgery for her back. This makes 3 or 4 surgeries needed on her back. We are planning to come to the office to see everyone Wednesday morning. We are planning to be there around 10 your time. Thanks Melissa..

Wednesday, December 30, 2009

MRI

Jordyn is having an MRI done today. The approximate time was 3 hours. She is currently doing the MRI. She has a tube down her throat to help her breath. She has about 40 more minutes to go! Please Pray!!!

Tuesday, December 29, 2009

Good Morning Everyone,

Melissa, Jordyn, Courtney, and Hannah will be visiting with us next week. Jordyn is scheduled to have surgery on the 6th. Melissa and the girls are coming up on the 5th to our LifePoint Corporate Office on January 5th. We encourage everyone to be able to come visit this family and share the joy they have with each. The holiday season were truly a blessing for them but their need for love and support is not over but just beginning. The next surgery is the most important surgery so far. We need to keep our prayers strong and show as much support as possible. Please pray for Jordyn, and Melissa as well. The majority of us do not know what she is going through so we need to as God to help her be strong for her family and Jordyn.

Monday, December 28, 2009

update from melissa!!!

"We all had a wonderful christmas. We throughly enjoyed it. We went to nashville to see grandma. She lays under her play gym and tries to grab the toys. It is truly wonderful to see her doing this. This means we have some motor skills. Jordyn is having an MRI done on the 30th and staying the night. Kidney surgery is still scheduled for the 6th at vanderbilt. Prayers are very much needed.. Things are going pretty good with jordyn right now. she seems to be pretty content most of the time..God Bless everyone for making our holiday this best one yet."

Nancy, Corey, and I with our families would also want to thank everyone for being apart of our lives as well as theirs. Your generous support and prayers give us hope in the struggling world and helps to prove that their are people out there who still care about helping others. We ask that you please continue to be with us and help Jordyn and her family! It has been a great holiday season but more to come so we still need prayers and support!!

Sunday, December 27, 2009

Great news!!! Jordyn started reachim for her mobile and playing, she can see it appears!!!! God bless!!!!!!!

Wednesday, December 23, 2009

Corey, Nancy, and I with our families took a trip down to see Jordyn, Melissa, Courtney, and Hannah this past Friday. This day was truely a blessing to us. The joy and excitement that all of us experienced is ndescribable. Meeting the family for the first time was amazing and we will always cherish this day in our hearts. The giving season is almost over with Christmas coming in a couple of days but we need to remember that the support, love, and prayers for Jordyn and her family DO NOT need to stop. Although we have worked our hardest to give the girls the best Christmas of their lives, we need to look beyond the gifts and now focus on the health and well being of Jordyn. Jordyn is still scheduled for surgery January 6th and Vandy. Please keep praying daily as you have been and God will keep blessing the family. We are never going to stop accepting donations or gifts for the family so if you are able, please help Jordyn and her family. They are a true blessing. Pictures from the weekend have been posted as well!!!

Tuesday, December 22, 2009

Update from Melissa!!

Jordyn went to the neurologist yesterday and he said she looks good but we just dont know how she is going to progress. She isn't lifting her head or doing anything that a 4 month old should do or her corrected age which is 2.5 months old.. (when she should have been born). We also went to the GI doctor and they said all sites look great. That the surgery part is doing great. She is real fussy and so they put her on levsin to try to calm her stomach. If that doesnt work by wednesday. They are going to switch to reglin. If that doesnt work then they have to do the j-tube connecting surgery. Kidney surgery is still set for jan 6th at Vanderbilt. She also has a MRI on Dec 30th where she has to be put to sleep and a tube down her throat to breath for her. She has a therapist coming today and next week has another theropy appointment at the hospital. Two different therpy companies. She weighs 9 pounds 2 oz... She is getting on up there... Thanks Melissa

Tuesday, December 15, 2009

New Information!

Jordyn is scheduled for the 1st part of her kidney surgery January 6th. After that, there will be a 2nd stage. She currently has low function in both kidneys and a stent has been placed in one.

By 6 months old, she has her first back surgery. This is to keep her chest from collapsing. This is going to be a two stage process surgery as well. There are only two surgeons in the country that do this surgery and I believe Melissa has to take to her to South Carolina for this surgery. This is going to be the biggest surgeries.

Jordyn is doing great after her Gtube and wrap surgery. Let's keep our prayers and support for her and her family!

Saturday, December 12, 2009

Great news!! Jordyn gets to go home today! She is doing great! Prayers arew being answered, keep praying for continued improvement!

Friday, December 11, 2009

Update from Melissa!!

We had a rough night last night. A lot of pain but we finally got her morphine dose correct. She is a lot better now. She had to have Benadryl because she was itching her face so bad. They took the bandages off this am and now everything is out in the open. She is getting fluids through it to make sure it works and she can handle it and then later in the day she will get started on her food. All incisions look good. Central line is being used as of this morning and is doing great. Will update as I can, Melissa

Thursday, December 10, 2009

Jordyn!

Jordyn is doing good! They are hoping she gets to go home Monday! Recent pictures have been posted on the right! Thank God for being with Jordyn, Melissa, and the people who administered to her before, during, and after the surgery! There still is a long road ahead so lets all keep praying and praying for their family! I will continue to keep you updated on her status as well as future surgery dates. Please do not stop showing your love and support for them!
Jordyn is out and doing good. Has some pain and will be receiving medications for it. We will get another update from Melissa in a bit.
LOOK AT THE PICTURE ON THE RIGHT OF JORDYN AFTER SURGERY!!!!
Just got an update, Everything is going ok. They are still working on the inside with the stomach wrap but the central line is in!

update from Melissa

"Everyone Nita Shumaker is one of Jordyns pedetrican. Lets all give thanks to her. Send her an email. She has been caring for Jordyn alot. She is wonderful. Many thanks to her. Jordyn still in surgery we havent heard an update yet. Will let everyone know when we do. Courtney and I are feeling better. I got Kisses on the top of the head, thats all Mrs Shumaker would let me.. Thanks to all and please pray"
Jordyn is in surgery right now just had a central line put in. Things are going ok right now. I will update as I get the updates. Prayers are need right now more than ever.
They have taken Jordyn back for the surgery. Expect 2 1/2 hours before the surgery is over. The surgery today is for the Gtube and wrap and central line. Please keep ALL of them in your prayers this morning! We will update as we find out more.

Wednesday, December 9, 2009

Important Update!

DeGrootJordyn and family need our prayers tonight. Missy and Courtney are sick and Jordyn is back in hospital. The NG tube fell out and they have her on IV till surgery tomorrow at 10:30 at TC Children's Hospital in Chattanooga. Pray for them all and we'll keep you posted on Jordyn when we hear something tomorrow. Thank you to all who have donated! You are so appreciated and loved for even the smallest gift, helps this family.
Please pray for Jordyn. Her surgery is scheduled for 10:30 at TC Thompson Childrens Hospital in Chattanooga this Thursday. Pray for her, pray for the doctors peforming the surgery, pray for the nurses that will be caring for her, and pray for her family!

Tuesday, December 8, 2009

Surgery is thursday at 10:30 at tc thompson childrens hospital. They are having a hard time with her feeding tube. Her antiobotics keep getting clogged up but they are working them out. Jordyn is really fussy the last couple of days but she is getting lots of love from mommy and sisters. Please continue you prayers and support!

Monday, December 7, 2009

Jordyn got to go home this weekend! She has an apenea monitor. Things are looking positive for Jordyn. They will be at home until Wednesday. She will be going back to the hospital to get admitted so she can have surgery on Thursday. Surgeries are very high risk so we need to keep praying and showing our love and support!

Saturday, December 5, 2009

Nancy went down to Chattanooga today to visit Jordyn and her family. Everyone seems to be doing good. Jordyn had a good day today other than a bloody nose but that was all. I have posted the great pictures that Nancy took to the right and also you can view more of them on the facebook page. The surgery for the wrap is still scheduled so we need to pray hard for her and the family. Please continue to show your support! The great works that you all have shown has certainly helped. Please pass this along and encourage others to donate as well! Thank you!!

Friday, December 4, 2009

GREAT NEWS!

Message from Melissa "well it looks like all the prayers might be going into effect. Ms Jordyn has been all day with no temp, she hasnt had any episodes in 5 days. After talking to the doctor if she doesnt have any eposides all the way until tues than they may reevalute weither she needs the stomach wrap. They may just do a g-tube with a jtube connecting. This is great news. If her culture comes back that she can only have iv antiobotics then she will get a central line put in the weekend. Things are really looking better and it is thanks to all the followers and prayers that everyone has reached out for jordyn. From the bottom of my heart I want to thank everyone. Wonderful things happen when people pull together for a brave stong little girl named Jordyn. God bless each and everyone who is behind Jordyn"
Things are looking a little better. The fever is down and has been down for a couple hours!!!
Jordyn has surgery schedule for this Wednesday. She is still in the hospital right now so she can finish her antibiotics to help get the fever down more. She will be in the hospital for 10 days from yesteday. Keep praying!!

Thursday, December 3, 2009

Update on Jordyn

Melissa emailed me and said that Jordyn has a bad kidney infection and that more than likely the surgery will be postponed for a couple of more days. She will be in the hospital for at least another week. They are contacting the kidney doctor to see if he still wants to postpone his surgery and do the stomach surgery first. Her urine and blood both have high white count. She will be on antibiotics for a few days to help the infections go down. Please Please keep praying for Jordyn and her family.

Kindey Surgery

As of right now, they have scheduled the Kidney surgery for January 6th at Vanderbilt. Her fever is still high so keep praying for her! I will keep you informed on any changes.

update!

Jordyn has been running a 103.7 degree temperature all night. The surgeons are not sure why at the moment but they are taking blood, urine, and salva samples to test for infection. Yesterday they did some cultures and it came back with some bacteria in it but not much. They do not think this is associated with the fever. Hopefully they can find out soon, if not they will probably have to postpone the surgery.

Wednesday, December 2, 2009

New Surgery Info

We have just found out that Jordyn will be having surgery in Chattanooga for the GTube and Wrap on Friday. This surgery will last about 2 hours and she should be able to go home on Monday.

Remember, this is one of numerous surgeries. Still remaining is the kindey surgery and back surgery (may be more than one surgery for each)

PLEASE remember this family in your prayers. If you want to help, click the donate button to the right or look at the list at the bottom of the page and contact me if you would like to send a gift and I will get the gift to you. My contact is brandon.brooks@lpnt.net or 615-714-1992.

Tuesday, December 1, 2009

Jordyn will be having a stomach wrap, gtube placement, and central line put in this week or as soon as it can be scheduled. Melissa found out today Jordyn will need a fundo and jtube. They are going to talk to the kidney doctor to find out which is more important to find out which surgery they will perform first. If the kidney surgery can wait then they will cancel the surgery at Vandy next week in order to have the other surgery in Chattanooga. We hope all goes well and remmeber to keep this family in your prayers!

Monday, November 30, 2009

Jordyn spent much of the holiday in the hospital. She has microdeletion syndrome of the 17th. She has brain, kidney, heart,back and Upper GI problems and abnormalities. Please post this to your facebook and pass around to everyone you know in email. Keep Jordyn in your prayers. She is a special child and not much is known about her disease. We will keep you informed on the lastest information.

Melissa, our thoughts and prayers are always with you!

Wednesday, November 25, 2009

We all know someone who is affected during this hard economic time.

Melissa Barker, and her daughters Hannah and Jordyn are in desperate need of assistance this Holiday season.

Jordyn, who is 2 months old was born with special needs and serious medical problems. She has spent most of her life in the hospital already.

Melissa is raising two other children alone and is in need of all the assistance we can gather during this emotional and trying time.

Christmas is around the corner and should be a time of joy and love. Helping Jordyn and her family will show them how people still love and care about others. The Lord says "Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you."