History

Wednesday, July 12, 2006 9:07 AM CDT

Hi everyone! It has been a very hot and muggy summer around here. Jacob and I have been trapped inside for many weeks. He is doing very well though, and he is anxiously waiting for school to begin. He asks about his "best friend", Alex, quite frequently.

We had a nice visit last week with Jacob's nurse, Jenny. She brought her kids over to play with Jacob and he really enjoyed that. He especially like showing off his spelling skills by writing every word he knows on his Magna Doodle. Funny kid!

Last Monday, we took Jacob to the zoo. Dennis' sister, Helen, and her family went with us. Jacob had a wonderful time "meowing" at the lions, tigers, and panthers, but cried when we tried to show him the birds. It was also nice to see him interacting in a positive way with his cousins, Mary and Madelyn. He usually cries when they are around.

We finally got word that Jacob's new power wheelchair is complete and will be delivered this Friday! WOOHOO! We are very excited as it has taken almost 9 months to get to this point. All Jacob knows is that his new chair will be red! I know he will love it though, because it has all the bells and whistles - literally!

Thanks for checking up on Jacob. Please take a moment to sign his guestbook!

Love,
Amanda, Dennis, and Jacob

Thursday, June 1, 2006 5:50 AM CDT

WOW! Where does time go? I can't believe it has been almost a year since I've updated this page. So much has happened I don't know where to begin.....

The biggest news is that our boy turned four years old this past February 3rd. He is such a four-year-old, in every sense: he likes to play computer, he likes to play ball, he likes to make everyone laugh (just like Uncle Dalton), he likes to draw. He just has an unbelievable desire for learning.

In August, Jacob started going to pre-k. He just loved it. He was (will be next year, too) in a class, with about 18 children, centered around speech and language development, which is just perfect for him. Nurse Jenny, who was in our home helping care for Jacob before, was/will be his one-on-one nurse at school. That is such a blessing.

Unfortunately, the effects of being exposed to so many other children in such a short amount of time really took its toll on Jacob. He was sick a lot throughout the school year. He contracted RSV (a respiratory virus that can be devastating for chidren with underlying respiratory problems) in December and was admitted to the PICU on Christmas day. It was a short stay, but he returned for two, three-week stays from February to April for several (3+) respiratory infections. During the first long stay, we decided to have Jacob surgically implanted with a (hopefully) permanent venous access port. Basically, a quarter-size rubber and titanium disk with a long, narrow catheter that goes through the jugular vein and to the heart was inserted just under the skin on his chest. This will prevent so many unneccessary I.V. "pokes" like Jacob has had to endure in the past. So far, it is working great and allowed us to bring Jacob home on I.V. antibiotics, which he needed for his infections.

As a result of being so sick for so long, Jacob has been on the ventilator 24/7 since mid-December. This has been an adjustment for us. However, he has been coming off of the vent for 30 or so minutes everyday. That's exciting! But, it will still take a long time to completely get him off during the day. That is, if he wants to!

Hopefully, next year, we can keep him healthy and IN SCHOOL!

Jacob is really talking these day. He says everything, and has such great manners. He's always saying "no thanks" and "yes thanks":-)! His verbal skills have just exploded in the past few months, which is just wonderful. Sign language is great, but he was really limited on expressions and, what I call, Jacobisms! He's just a funny boy!

Jacob started a trial with a power wheelchair in September. Because it has taken so long to get a permanent one (insurance, isn't it wonderful?!), we decided to rent the trial chair. Jacob does great in it, and loves to be on the go. We are hoping to have his in a month or two!

I promise it will not be a year before I update Jacob's page again! I will stay on top of it!!

I hope everyone has a wonderful Summer.

Monday, June 6, 2005 7:05 AM CDT

The new pictures have been up a few days so I thought I would add an update. Overall, we are doing quite well. Unfortunately, however, Jacob has something right now. Not quite sure what it is because I haven't taken him to the doctor yet. I am thinking he may have a sinus infection and a touch of pneumonia (his left lung sounds a little congested and doesn't get much better with treatments). We are doing nebulizer treatments every 3 hours and he hasn't gotten any worse in the past 2 days - that's good! I will probably be calling the doctor today.

His surgery combo is scheduled for June 20, but it may change now with this illness. His pulmonologist is very conservative and may not give a pulmonary clearance (any child followed closely by a specialist, especially pulmonary, cardiac, gastrointestinal, must be "cleared" by that doctor before another doctor will operate on them) for another 4-6 weeks. Jacob always takes a while to get back to his baseline, which is where he needs to be for any surgery.

The weather here in Florida is just unbelievable. It has been raining for 6 days straight. And, the few minutes of the day when it is not raining, it is so muggy and hot that you still can't go outside. Jacob is not liking this because we spent so much time outside during the Winter months and the first part of Spring. We went for walks in the wagon almost every day. Hopefully the rain won't last much longer.

Jacob should be starting school in the Fall. It will probably be homeschool, but I am going to request that he be allowed to go to the classroom a few hours a day for some social interaction. I will probably have to take him for his therapies anyways.

Take care, everyone!

Love,
Dennis, Amanda, Jacob Hollingsworth

Thursday, April 28, 2005 6:28 AM CDT

Hi everyone! Jacob is doing well, although his allergies are still bothering him. Some days are better than others. His nose is running on/off, he is scratching his arms and legs, and his eyes are dry and red. I don't think the Claritin is working for him as well as it was. I am going to schedule a visit to the pediatrician next week.

Jacob hasn't had his adenoidectomy/sinus surgery yet. We decided to wait until he visited the urologist reguarding his undescended testicle so that we could try to schedule everything together. He just doesn't need to be under anestesia any more than necessary. He went to the urologist this past Monday and he does want to proceed with the orchiopexy, which is bringing the testicles down. He said that the right one is in good position to move, but they may have to search a little for the left one. If the left one is too far into the abdominal cavity it may not be worth saving. However, a boy can develop normally with only one, meaning that one testicle can produce enough testosterone to allow him to go through puberty without any problems. All of this should take place sometime in June in St. Petersburg at All Children's Hospital.

Jacob FINALLY goes tomorrow for an eye exam. We couldn't make the last appointment because I was too sick to take him. I am very anxious for him to get a new eyeglass prescription. It should really make a difference for him.

I have a meeting with the school in the morning to discuss some of the needs Jacob will require once he starts school. We had a preliminary meeting a few weeks ago and they have been gathering all of his medical records. Needless to say, I think they are a bit overwhelmed by it all. However, they have to do whatever is necessary for Jacob to attend school.

Dennis and I took Jacob fishing for the first time a few weeks ago. We all had a great time. Jacob even got a new Sponge Bob Square Pants rod and reel for the occasion. He enjoyed watching me cast over and over and over and would sign "again" whenever I would stop. Dennis thoroughly enjoyed being able to take him and tried very hard to catch a fish for Jacob, but we had no luck that day. We are hoping to take him camping in a few weeks. That should be quite an adventure.

This past week Jacob and I had the opportunity to chat with and see my Dad on the web cam. It was so awesome and we really enjoyed it. We don't get to chat with him too often because of the time difference and his work schedule, but it worked out perfectly. Jacob kept signing "Grandpa" and blowing him kisses. It was definitely a memorable event. Hopefully, we can do it again soon!

If I don't update before next week - HAPPY MOTHER'S DAY to all of you mommies.

Take care!

Love,
Amanda, Dennis, Jacob Hollingsworth

Saturday, April 2, 2005 3:56 AM CST

Hi everyone! Jacob is doing much better. However, about a week after getting home from the hospital he developed a horrible sinus infection that put him right back on the vent - no oxygen this time, though. His ear, nose and throat doctor now wants to remove his adenoids (a common place for yucky bacteria to grow and cause sinus infections) and culture his sinues to see exactly what is growing in there. Jacob has had sinus problems for the past 2 years or so; it is now time to address them. He will also have some allergy testing done. In the meantime, I started him on daily doses of Claritin and Benadryl and it has a made a huge difference. It is allergy season here in Florida, so that probably has a lot to do with it all.

Jacob finally goes back to the eye doctor on Monday. Poor little guy has been pulling his glasses away from his face to see. It is really cute, but he needs a new prescription. He will probably get bifocals; it will be interesting to see his reaction when he puts them on for the first time.

Dennis was really sick last week and now I am. We both have had horrible (and painful!) coughs and severe body aches. I am just thankful we weren't all three sick at the same time. It is hard enough when it is just one of us. I am going to the doctor this morning (a walk-in after hours clinic) so hopefully I can get some meds to help me out. I really pray that Jacob does not get whatever we have. He got a flu vaccine and a pneumococcal vaccine, so hopefully he is covered.

Please keep Jacob's Grandpa (my Dad) in your prayers. Some of you may know that he is in Iraq helping fight the war on terror. I know he checks up here from time to time, so, Dad, we love you and can't wait to see you again. I keep showing Jacob your picture and he still does the sign for "Grandpa."

Happy Spring to everyone!

Love,
Amanda, Dennis, Jacob Hollingsworth

Tuesday, March 15, 2005 6:40 AM CST

Jacob is much better this week. He is now off the ventilator most of the daytime, but still requiring a little oxygen at night. I thought it would take him much longer to come off the vent this time, but Jacob had different plans. He is really good at letting us know when he needs the vent and when he wants off of it. I am taking him in this morning for a follow-up chest x-ray and then to the pulmonology doctor. Next week I have to take him all the way back to Tampa for a follow-up with the ear, nose and throat doctor.

Tomorrow we have an appointment with the school for Jacob's evaluation. We will decide whether or not he should go to school or have a teacher come to our house.

Jacob (and Dalton) got in the kiddie pool yesterday for the first time this year. Although the water was a little cold, they had lots of fun. I will post a picture on the photos page. I am sure we will be using that little pool quite a bit this year. Jacob loves it!

Jacob's 3-year check-up with the pediatrician was last week. He is now 33lbs 12oz and 43in tall (still >99th The doctor gave us a referral to a pediatric urologist so that we can discuss our options for surgery for Jacob's undescended testicle. I am still waiting for a return call for an appointment.

Some of Jacob's friends have been sick lately. Please keep them in your prayers. Javad (www.caringbridge.org/or/javad) just returned home from a hospital stay.

Amanda, Dennis and Jacob Hollingsworth

Thursday, March 3, 2005 1:31 PM CST

Hi everyone! Thanks so much for all the prayers. Jacob is doing better and we are home now. He lost a lot of his strength during his illness and it will probably take a few weeks to get it all back. Right now he is having to stay on the ventilator and oxygen 24/7. Double pneumonia tends to take a lot out of a person, especially one with an already compromised respiratory system. Being so far away from home didn't help either. Mom and Dad are very tired from this very long week.

Take care!

Amanda

Monday, February 28, 2005 3:00 PM CST

Jacob came out of the operating room about 2 hours ago and he is doing fine. They only had to put the scope down and take a look. There was no lasering or cutting done. He only had a little anesthesia, so he was awake within minutes of coming out. Much to everyone's surprise, there was no granulation tissue, but there is a lot of irritation and tracheitis. The surgeon put in a longer trach to bipass the irritated area of his trachea. Hopefully we will be going home tomorrow.

Sunday, February 27, 2005 8:11 PM CST

I am updating from the hospital. Jacob has been in the hospital since late Wednesday afternoon. He has been sick with pneumonia for about 10 days now, but we were taking care of him at home. And, he was doing really well until Wednesday. His fever returned and he began coughing up blood. I called 911 and we went to HealthPark in Ft. Myers. Unfortunately they were full to the max, so Jacob was transferred to All Children's Hospital in St. Petersburg. Keeping in true Jacob fashion, he hasn't had a fever AT ALL since we arrived. Oh well! We are still suctioning a significant amount of blood. Right now we are waiting for a spot to open in the operating room. Jacob is going to have a bronchoscopy and laryngoscopy (a camera will be put down his trach and throat) done to determine where the blood is coming from. We are almost certain that it is granulation, or scar, tissue from the trach. He has probably had it for quite some time, but having to be suctioned so much while he has been sick aggrevated it and caused more bleeding. The tissue will be lasered away.

Jacob is in very good spirits. He is playing and making new friends with the nurses. His day nurse played with him while Dennis and I went to get dinner. When she left, he pointed to the door and signed "friend" and "play." Earlier this afternoon we took him for a walk. He really enjoyed that. Right now he is watching a video and resting.

I will update tomorrow if Jacob goes to the OR.

Thursday, February 3, 2005 7:52 AM CST

Happy 3rd Birthday, Jacob!!!!

Friday, January 28, 2005 7:58 AM CST

Hi all! Thanks for visiting Jacob's page. He is sick right now, but nothing serious. We think he has parvovirus, also known as Fifth's Disease. It usually takes a few weeks to completely run its course. Unfortunately for Jacob it means more time on the ventilator because it does cause cold-like symptoms (translate - tons of suctioning) and lethargy. It also causes rash, which Jacob doesn't have yet, and very red, itchy eyes and joint pain, both of which he does have.

Otherwise Jacob is doing fantastic. We are giving his eyes another 3 or 4 weeks to heal from the surgeries and then he is going to get an eye exam. He will have his big three-year-old checkup next week. He will then probably have to see a urologist because his left testicle has never come down into place. He will more than likely need to have surgery for this due to the risk of developing a malignancy in his teen years. His pediatrician and I agreed that if had not been found by age three that I would take him for a urology consult.

Next Thursday (Feb 3) we are having Jacob's Early Intervention/public school transition meeting. I am very excited and nervous at the same time. I kwow Jacob will succeed and do very well, but I am not looking forward to having to put up a fight to get the services that he needs and has every right to receive. I am just not good at that. Hopefully that will not be the case, especially since I will probably be keeping him homebound for a few years.

Ok, so in just six days, my little baby boy will be "3" years old. I just can't believe it. Time has gone by so quickly and it seems like just yesterday I was praying to go in labor so I could hurry up and get it over with. Little did I know what the next 3 years had in store for me. I wouldn't trade one minute of it. Jacob is all excited because he keeps seeing the Sponge Bob party items. And, since he had such a great time helping make his Daddy's birthday cupcakes, I figured he could help me make his. I will definitely post some pics of the party.

Please visit Jacob's Quilt of Love at http://quiltsoflove.com/quilt_2005/jacob_DH/jacob_DH.html
This is a very special piece that was done for him by Angel Jean. She is part of a very special group of women who put their heart into producing these fabulous works of art for very special children.

Again, thank you for visiting!

Amanda, Dennis, Jacob Hollingsworth

Friday, January 14, 2005 7:19 AM CST

Happy New Year, everyone! I must say we had a wonderful time ringing in the new year - we were sleeping. Yes, we fell asleep around 10:30. Oh well! However, we were at Aunt Pam and Uncle Antione's house down in Ft. Lauderdale for the entire weekend and we had lots of fun visiting with them. Jacob especially liked sitting on their 2nd floor balcony and looking at the lake.

Christmas was also a blast. Jacob had tons of fun opening gifts, which I did not expect. His best gift was a little red wagon, which I HAVE to take him for walks in everyday. Fortunately, the weather has been nice for the past few weeks, but that is expected to change today. He also got a remote control truck, two virtual fish tanks, a magnet board for his letters, books, clothes, movies, etc. He was just a happy little boy with no worries - just the way it is supposed to be. It was a very blessed Christmas for all of us and we are very thankful for that, especially at this time in the world when there are so many horrible things happening.

A great surprise to us was that we were able to see my Dad at Christmas. Unfortunately, he left for Kuwait on December 29 and will be going into Iraq on Jan 17 (?). Also, my Dad's cousin, Mark, is in Iraq. he left just a week after my Dad. Please keep them and our family in your prayers. I have spoken to my Dad on the phone a few times and he seems to be in really good spirits. So, Dad if you read this, we love you and miss you and hope this year goes by very quickly. Jacob says hi!!

We finally have some, albeit not the best, resolution to our nursing issue. Our insurance has agreed to let us use a $10,000 skilled nursing visit allotment that is in our policy for private duty nursing, or hourly nursing. The down side is at the $50 an hour the agency gets from insurance, that will only last about 5 months. That is even cutting back to 2, 6 hours shifts instead of 3, 8 hour shifts per week. It is crazy and ridiculous. So we are going through some appeals and reapplying for Medicaid and SSI, in hopes of getting moved to the top of the med waiver list, which would allow for much more home nursing. Also, Jacob's pulmonologist is scheduled for today to have a conference call with the medical director of our insurance company to try to get more out of him. I am anxiously waiting to hear how that goes.

Jacob has been very busy learning new signs. His sign language has exploded over this past month or so. He received new Signing Time videos and that is all he wants to watch. But I have to be sure to watch them with him or he learns more than me, which isn't good because then I have no idea what he is saying. He is also beginning to spell words and he knows the colors of the rainbow, in order. Everytime he sees me eating, he signs "cereal." It is very funny! And, healthwise, Jacob is doing really well. We are trying to get through this month without a hospital visit. For the past two years, Jacob has spent 10 days in January in the PICU at Health Park Hospital. I can certainly live without it. I tell him all of the time that when he wants to visit his friends there, just let me know and I will take him. There is no need to get sick just to visit.

On a very sad note, a fellow MTM sufferer, Austin, passed away this week. His family is suffering deeply. Lisa and Fred, his parents, and his grandmother, Carolyn and the rest of his family need your prayers to get them through these next few weeks and months. Although his time on this Earth was short, Austin left an impression on all of us in our small community. There are no words. Godspeed, Little Man.

With Love,
Amanda, Dennis, Jacob
Hollingsworth

Tuesday, December 21, 2004 7:51 PM CST

We want to wish everyone a Merry Christmas and a Happy New Year. May your Holiday Season be blessed and filled with love and laughter.

Love,
The Hollingsworth Family
Dennis, Amanda, and Jacob

Saturday, December 4, 2004 6:26 PM CST

Hi everyone!! I know it has been awhile since I last updated, but things have been hectic for us. First of all, Jacob's left-eye surgery was November 29; it was successful. He isn't seeing too well right now, but it is too early to get a new prescription. His eye doctor said it will take about 6 weeks to heal enough to get a permanent eyeglass prescription.

I hope everyone had a wonderful Thanksgiving. Jacob and I, along with Aunt Pam, went to Georgia to visit my dad. He is leaving for Iraq this month and it was our last opportunity to visit with him. We had a great time while there. Please keep him and all of the servicemen and servicewomen in your prayers, especially this holiday season.

Jacob is very excited about Christmas. He loves our tree and fiber optic snowman. Unfortunately, I can't get him to sit with Santa Claus. Oh well, maybe next year. I think we are going to have a great time with him on Christmas morning.

Happy Holidays to everyone!

Love,
Dennis, Amanda & Jacob Hollingsworth

Tuesday, November 2, 2004 7:20 AM CST

I can't believe how quickly the Holidays are sneaking up on us. This is going to be the best year yet with Jacob; he will be so excited. We are really looking forward to having a great time with him.

Jacob's left-eye surgery was scheduled for yesterday, but we decided to postpone because Jacob (and I) came down with a sinus infection. He isn't really sick, but we just didn't want to take the chance. He has a more difficult time than most with anethesia, so we decided to play it safe. Anyways, he is re-scheduled to have it done on November 29.

Other than the sinus infection, he has been doing very well. He has been busy learning new signs and playing computer games, which he just loves. He is really getting the mouse down and he knows his letters, so he should be using the keyboard in no time. You may be getting e-mail from him soon!

Jacob went Trick-or-Treeting for the very first time this year and he really enjoyed it. He dressed as Bob the Builder and he just thought he was really cool. It was very cute.

Please take a moment to sign Jacob's guestbook.

Take care.

Love,
Dennis, Amanda & Jacob

Friday, October 1, 2004 7:00 AM CDT

Hi everyone! This has been quite a month for us. Our vacation went wonderfully. We had such a great time taking Jacob to the beach, the zoo and the aquariums. He mostly enjoyed the time in the water with his Daddy. They just sat or stood in the water for hours and, when they would get out, Jacob would just continually do the sign for water. He also loved the animals at the zoo and aquariums, especially the fish tanks. Jacob LOVES fish, especially "Nemo" fish, as he calls them. At the FL Aquarium, there was a huge shark and sea turtle tank, and, of course, those were "Bruce" and "Squirt", respectively. He also liked seeing the animals at the zoo and doing the signs for all the ones he knew - monkey, elephant, giraffe, fish, bird, tiger (cat), etc.

Four hurricanes - Charley, Frances, Ivan and Jeanne - and one tropical storm - Brenda - have struck Florida in less than two months. Three of those hurricanes - Charley, Frances and Jeanne - have been threats to our area. We have been incredibly fortunate, however. We haven't had to go to a shelter yet, but did have the van packed up to go once. It is just very scary not knowing where these storms are going or what they are going to do. It is very stressful and emotionally and physically draining. I pray that it is over. Please continue to keep those most affected by these storms in your prayers. I have seen some of the devastation and it is horrible.

Jacob had his right eye cataract extraction surgery on September 20. Everything went well and he has completely recovered. He does have 2 more follow-up appointments in Tampa just to be sure, but I am not forseeing any problems.

And, finally, Jacob's health has been excellent. I am praying that this will continue through the cold/flu season, but he hasn't made it one season so far without a hospitalization. I am hoping that won't be the case this year. I would rather keep him home on the ventilator for several weeks or months than spend one day in the hospital.

On a sad note, our insurance company is trying to cut out our nursing. Jacob has had a nurse now for about 8 months and we have really grown to like her. We are prepared to fight the insurance company with everything we have, because we know that Jacob (and Dennis and I) really need to have a nurse helping us.

Thanks again for stopping by. I will try to get some pics from our vacation up today.

Love,
Amanda, Dennis & Jacob

P.S. Please continue to keep Janice & Alistair (Matthew's parents) in your prayers. The gravity of the loss of their son is very heartbreaking. We love you and are thinking of you both everyday!

Monday, September 6, 2004 8:06 PM CDT

Hi everyone! This has been quite a few hectic weeks. Florida has had two hurricanes in 3 weeks and this has been very stressful for us. Fortunately, both of them hit just north of us, but we felt the effects (wind and rain) from both of them. We have several family members spread out around Florida with no power, phone or water. Now, as if that wasn't enough, Hurricane Ivan looks as though it is on a track towards Florida. Please pray for everyone affected by these terrible storms.

Jacob has been doing excellent. His eye surgery is scheduled for Monday, Sept. 20 in St. Petersburg at All Children's Hospital. We are very anxious about this operation. We are just hoping that all goes well and there are no complications. Jacob is now having some problems with his teeth. His mouth is very narrow and, now that his molars are trying to cut through, his other teeth are beginning to crowd and cause discomfort for him. His gums are very swollen. He will be seeing a dentist after his eye surgery.

Jacob's cognitive skills are growing by leaps and bounds everyday. I say this all the time, but HE IS SO SMART! He is now learning the alphabet in sign language and can identify about half of the letters. He can also spell his name in sign language and with letter blocks. Also, he is putting 3 and 4 signs together to make sentences. We are just so proud of him!

Tomorrow, we are leaving for a 5-day vacation in Clearwater Beach (near Tampa). We are very excited and think Jacob will have a great time. While there, we plan to visit Lowry Park Zoo and the Florida Aquarium in Tampa and just relax on the beach. This is much needed time away for us. I promise to update with new pics as soon as we return.

Take care!

Love,
Amanda, Dennis & Jacob

Sunday, August 29, 2004 5:28 PM CDT

One of Jacob's very special friends, Matthew, who also suffered from X-linked Myotubular Myopathy, passed away on Friday, August 27, 2004. I would like to ask that everyone say a special prayer for the family. If you wish to leave a message for his Mother and Father, please visit http://www.caringbridge.org/africa/matthew.

Janice & Alistair, Please know that we are thinking of you during this very difficult time.

The Hollingsworth Family
Dennis, Amanda & Jacob

Tuesday, July 20, 2004 12:47 AM CDT

Hello everyone! I want to first apologize for not updating Jacob's page more often. Hours become days, days become weeks, and so on. However, I can say that Jacob is doing fantastic. We had a quick trip to the ER a few weeks ago, but he is fine now. I took him in (actually we went via ambulance) because he was keeping a temp around 103 and I couldn't get it down. He was fine once we arrived and wasn't admitted. He just likes to keep us on our toes!

Jacob does have to have surgery for his cataracts. He has an appointment next Wednesday and we will find out then when the surgery will be. It should be an outpatient procedure, but he will have general anethesia, so please pray for no complications. I promise to update once I know more.

He continues to just amaze us all with how smart he is. He can identify all of his colors and numbers 1-10. He is beginning to learn the alphabet. Also, his sign language is improving everyday. He knows at least 50-60 signs and easily learns new ones.

His nurse (Jenny) is still coming 3 days a week. She is such a blessing because she really cares for Jacob and his well-being. I think he really likes having her around, also. It gives me and him a break. It is working out well. She even quit her other job to focus more on Jacob. Last week, after Jacob's eye doctor appointment, he and I went to her house to meet her children. Jacob had lots of fun. Hopefully we can go back soon!

Other than that, there is just not much going on here. Jacob keeps us pretty busy and we just love it.

Please sign our guestbook to let us know you stopped by.

Love,
Amanda, Dennis & Jacob Hollingsworth

P.S. Our friend, Javad, who is also affected by MTM, has been hospitalized quite a bit lately. Please pray that for his health and that he can go home with his family very soon. We love you, Javad!!

Friday, May 7, 2004 5:23 PM CDT

Hi everyone! First, I want to say thank you for everyone who visits here to check up on Jacob. We love you all!

Well, although Jacob spent 2 days in the hospital last week, he is doing quite well. He has been fighting an infection for several months now and was on 4 different courses of antibiotics in about 2 months. Finally, we decided to admit him and have cultures done and get him started on an inhaled antibiotic called Tobi (he also got I.V. antibiotics). Fortunately we were able to have the pharmacy overnight the delivery of his prescription so he didn't have to stay very long. It is 8 days later and he is doing great.

Jacob is learning so many new things. He picks up new signs daily and uses them very effectively. He is also beginning to put two or three signs together to make mini-sentences. His voice is also improving and he is trying very hard to make the "m" sound. He still says "dada" many times a day and also makes the "l" and "g" sounds. Very smart boy!

Today, Jacob got his AFO's - ankle-foot orthosis, or braces. These will help keep his feet from pronating, or turning inward, when he stands in his walker. Unfortunately, we have been unable to obtain a stander for him, but he will definitely need the AFO's when he does get one. He was not a happy boy today while the orthotist was trying them on him. I hope they are not too uncomfortable for him; we will just have to start out slowly and give him time to adapt, just as we did with his back brace.

Have a great weekend! Happy Mother's Day to all of you wonderful mothers!!

Love,
Amanda, Dennis & Jacob

P.S. Please continue to pray for Javad, Jacob's friend who is also affected with MTM, and his family. He is still in the hospital. We love you Javad!

Tuesday, April 20, 2004 11:41 AM CDT

Hello everyone! Jacob is doing well, health and otherwise. He is improving and getting stronger everyday. His biggest accomplishment is that he now says "dada", and a host of other sounds and "words". I know that "mama" is coming soon. He had a speech therapy evaluation yesterday and the therapist was so impressed with his language and communication (signing) abilities. She still recommended a communication board for times when he is ill and needs another form of communication. I think it is a great idea.

This past weekend, Jacob was able to swing on the tire swing and ride the merry-go-round at the park. He absolutely loved it and was very upset when it was time to stop. I can't wait to take him back. Enjoy the pics!

Easter was also lots of fun for Jacob. He colored Easter eggs for the first time and made quite a mess. He even helped hunt them on Easter morning. We had a great time.

I wish there was more to say, but not too much has been going on here. Jacob continues to enjoy his nurse; she loves him so much. We are very happy that we decided to have someone help out. It has been great for all of us.

Happy Spring to everyone!

Love, Amanda, Dennis & Jacob

P.S. Please keep Jacob's friend, Javad, in your prayers. He is in the hospital right now.

Friday, March 19, 2004 9:44 AM CST

I know, I have been slacking when it comes to updating. Sorry! Anyways, things continue to go well for Jacob. Although he has a little touch of something this week, after only 2 days on Augmentin, he seems completely better now. On Tuesday & Wednesday, he had a continuous fever and needed to be on the vent with oxygen. But, that didn't last long; he bounced right back.

Jacob is doing so well with sitting up. His occupational therapist is just amazed. Last Thursday, she timed him while he sat up, without support, and played - 6 full minutes. And when he finally lost his balance, it was only because he got overly excited. His head control is getting so much better. He also got a new chair last week - it is a Tumble Forms chair. He loves it as it gives him a break from his wheelchair, which can get hot and uncomfortable after a while. He can also sit anywhere now - on the couch, outside on the patio chairs, in the grass, etc. in this chair. I put a pic of him in it in the photo section. He continues to use his gait trainer (walker) very well. We aim for 20-25 minutes, 2x a day, or whatever he can tolerate. He has learned how to go in a circle - backward of course. We are working on forward, but I think he just likes to go backward.

He *should* have a new stander by the end of next month. A local church is having a fundraiser to help purchase the stander. We are very excited, as we have tried every possible route to try to get funding for it. He will be fitted for ankle-foot orthosis (braces) next week. He will not be able to stand without them because his feet turn inward due to his extreme hypotonicity.

Other than that, Jacob is busy learning new things everyday. He knows most of his colors and shapes - and just loves yellow circles. He is picking up new signs daily and uses them to let us know what he wants. He can tell us when he wants to go outside, what he wants to watch on T.V., when he wants to take a bath, etc. Also, he is now officially over Bob the Builder and has moved on to Blues Clues. I don't know who will be next!

Thanks for checking in on Jacob. There are new pictures posted, as well!

Take care.

Love, Amanda, Dennis & Jacob

Tuesday, February 24, 2004 2:14 AM CST

Finally a moment to update! Jacob is doing really well. We are sure that he is completely over his recent pneumonia, which, for some reason, seemed to linger for a little longer than usual. His most recent chest x-rays look very clear and normal. He is still getting a few more breathing (nebulizer) treatments than he normally does, but they seem to be really helping him. Also, the weather here in Florida is on the fritz again. And this always affects Jacob's secretions causing us to have to titrate his treatments and Robinul (medication used to help dry up some of the secretins) to get a more desired effect. If only this were an exact science! :-)

Since the last update, Jacob has been seen by the opthlamologist, who diagnosed him with severe, progressive myopia (translation - he needs glasses to see) and cataracts. The cataracts will be monitored over the next few months and will be removed if they become a hinderance to his vision. He is now the proud owner of a gorgeous pair of Blue's Clues glasses. If you thought he was cute before, well, that was just a teaser. (See above picture!!!) He is so excited that he can see and we are, too! It really explains a lot that has been going on the past few months - not interested in TV as much, losing balance more easily while sitting up, etc.

Many of you may know that we recently got a nurse to help out with Jacob. It is working out really well! We have one nurse who comes 2-3 times per week (Monday & Wednesday and sometimes Friday evening). This is a huge help because it allows me to get things done, i.e. grocery shopping, telephone calls, etc. and have some time to myself. It is also a great help when Jacob has a doctor's appointment. She and Jacob are getting along quite well and she seems to really care about Jacob, which is great.

Thanks for stopping by and checking in on Jacob. Please take a moment to check out his photo gallery and sign his guestbook!

Love,
Amanda, Dennis & Jacob

P.S. Jacob's friend, Benjamin, is currently in the hospital fighting a respiratory virus. Please keep him in your prayers and visit his website to leave his family a word of encouragement. www.caringbridge.org/hi/frombenjamin

Thursday, February 5, 2004 10:06 AM CST

Jacob is doing so much better. I would say he is 99.9etter. He is still getting several breathing and Vest treatments a day, but it is better than having him sick again.

Yesterday, we went to the orthotist to pick up his back brace. Fortunately, he is tolerating it quite well. I expected it to be much bigger and bulkier, but it actually quite small. (I will post some pics of him in it later.) The idea of this brace is to keep his back as straight as possible while he is sitting to prevent him from developing kyphosis, which is a form of scoliosis where he would be slumped forward. This is very common in children with neuromuscular diseases due to their low muscle tone and poor posture. We hope this helps Jacob!

We are still trying to get Jacob a stander. It is beginning to get very frustrating because he needs it so badly. Insurance doesn't want to cover it and we can't find any supplemental funding to help out. We are now appealing insurance's decision. The idea of a stander is to help with weight bearing, which is vital for muscle and bone strength. It will also help improve overall circulation and digestion.

Jacob has a few upcoming appointments. Monday he is scheduled to see a new GI doctor. This is a doctor that will monitor and address any feeding tube and dietary issues that we may have. Unfortunately, this doctor is in Sarasota, which is about 2 hours away. His previous GI doctor no longer accepts our insurance. The good part is that this is not a doctor that will have to be seen on a regular basis - maybe every 6 months-1 year. And of course, his monthly pulmonology visit is next week. This is getting more and more difficult because he knows that he gets a shot when we go there. (He is still getting synagis.) It makes for a miserable visit. He will also be seeing an opthlamologist, because his pediatrician is concerned about a spot on his cornea. His vision and eyes checked out great last year, but I guess he will be having another exam soon. And, he will be returning to the orthopedist to follow up on the back brace and to address the issues of ankle-foot orthotic devices (to prevent his feet from turning inward, especially if he gets a stander) and his right leg being significantly longer than the left. That will probably involve just a shoe insert or special shoes.

Well, that is what is going on in Jacob's ever-busy world. We hope everyone is well. Please take a moment to sign Jacob's guestbook and visit his friends who are also sharing this journey:
Benjamin: http://www.caringbridge.org/hi/frombenjamin/
Javad: http://www.caringbridge.org/or/javad/
Matthew: http://www.caringbridge.org/africa/matthew/

Take care!
Love, Dennis, Amanda & Jacob

Monday, February 2, 2004 4:33 PM CST

Happy Birthday to You!
Happy Birthday to You!
Happy Birthday dear Jacob!
Happy to You!

We Love You, Big Boy!
Mommy & Daddy

You are �2" Years old now!

Thursday, January 29, 2004 1:18 PM CST

Jacob is HOME SWEET HOME!! He came home on Monday afternoon, thanks to me pushing the doc a little. I convinced him that we can take care of Jacob at home just as well, if not better, than the hospital staff. Not that they aren't great, because they are, it is just very stresful being there.

He is still not 100% better. His last x-ray (Monday) still showed some left, lower lobe atelectasis, but we are working hard to improve that. He is getting 8 breathing treatments a day (3 different medications), along with the Vest therapy 4 times per day, and staying on the ventilator most (20-22 hours) per day to help him recover. He is also on antibiotics and steroids, both of which he received via I.V. line in the hospital. He is scheduled for another x-ray on Monday - keep us in your thoughts and prayers that day. He also has his big 2-year check-up that day! I can't believe that he will be "2"!!

Today, he is having a very hard time with diaper rash, which I assume is yeast. His antiobiotics are causing several, very powerful diapers a day, which is leaving him very red and irritated. He just cries and cries everytime he messes his diaper. Poor little guy! Daddy will be bringing home some yeast cream, acidophilus and Pedialyte tonight. Hopefully, all of this will help him.

Meanwhile, I am working hard to try to get some additional financial assistance for us. We have "OK" private insurance, but the co-payments are outrageous and it only covers 50% of prescriptions. I have an appointment for SSI on Feb. 13 and have also applied for Children's Medical Services. It is very frustrating to not be able to get the help Jacob needs and deserves.

I guess that is all for now. I will continue to update as Jacob recovers.

Please take a moment to visit a few of Jacob's friends' pages:
www.caringbridge.org/or/javad/
www.caringbridge.org/hi/frombenjamin/
www.caringbridge.org/africa/matthew/

Take care.
Love, Dennis, Amanda & Jacob

Saturday, January 24, 2004 8:50 PM CST

For those of you who don't already know, Jacob is in the hospital. He has been there since Monday. He is doing much better than he was, but he is still having a difficult time with pneumonia/atelectasis in his left lung.
This all began last weekend when we noticed blood in his secretions. We weren't too concerned because it does happen from time to time. But, it didn't go away. On Sunday, Jacob woke from his nap with a 102.9 temp and his heart rate was in the 180's. We finally got his temp down and were able to administer oxygen to help with his increased work of breathing. We began doing his breathing treatments every 4 hours and just thought he had a little bug. Well, on Monday, I could not keep his oxygen saturation above 90% and his heart rate was, again, in the 180's (120 is normal for Jacob) and his respiration rate was very high - 70's (35 is normal for him). So, I called 911, and Jacob and I rode in the ambulance to the E.R. Once there, an x-ray revealed an upper-right lobe and lower-left lobe pneumonia.
He was immediately put on a breathing rate on the ventilator (the ventilator was breathing 20 times per minute for him) to help him rest. By Wednesday morning, his right lung was completely clear. Unfortunately, his left lung is still partially plugged. He is scheduled for an x-ray in the morning. We are praying that it will reveal much better results. If it does show that he still has pneumonia, he may have to be taken to the O.R. on Monday for a bronchoscopy (this is where a tiny camera will be inserted into his lung and the doctor will be able to remove the mucous plug).
Please keep Jacob in your prayers!

Love,
Amanda, Dennis & Jacob

Friday, January 9, 2004 3:13 PM CST

Hello, everyone! Jacob is doing really well! This past Tuesday I took him to the orthotist, who measured him for a scoliosis brace. He wasn't too sure that Jacob needs AFO's (ankle-foot orthotic devices), but I will be taking him back to the orthopedist (MD) for his opinion. At any rate, it was an overall good experience and the staff were very friendly and accomodating for Jacob. Jacob, of course, did not like them touching him. We did, however, have to wait for 1 1/2 hours for insurance to authorize the visit.

We have been having major insurance issues, but they seem to be subsiding. There have been drastic changes to our policy and most previous providers are no longer providers - it has just been really crazy! We also received a letter stating that all of Jacob's feeding supplies (pump, bags, syringes, mic-key buttons, etc.) will no longer be covered. Fortunately, we found a loophole that will allow those supplies to be covered for one more year. I guess we will fight that battle next year - at least we have something to look forward to! There was also a major problem getting our supplies and equipment authorized for this month, but it was resolved yesterday.

Jacob had his yearly Early Intervention evaluation yesterday. It went really well, but the scores are just not too meaningful to me. They (3 strangers) basically come into our home and "evaluate" Jacob to determine on what level he is on in different areas. His scores were as follows:
Gross Motor - 5 months
Fine Motor - 15 months
Communication - 4 months
Self Help - 6 months
Social/Personal - 9 months
Cognitive - 13 months

I was a bit concerned about the last one, but I know that in the scope of things, this really doesn't matter.

Jacob's 2nd birthday is quickly approaching!! February 3!! His party is planned for Sunday, Feb 1.

I hope everyone has a wonderful weekend. Please take a moment to sign Jacob's guestbook.doesn't change how incredibly smart Jacob is. We know he is smart and that is all that matters. They base it mostly on how he is able to communicate his cognitive skills.

Thanks!

Love, Dennis, Amanda and Jacob

Tuesday, December 30, 2003 7:01 AM CST

HAPPY NEW YEAR!!

Well, Christmas came quickly and went by quickly. But it was a lot of fun for us. Although we were expecting Jacob to be more willing to open gifts, he did not care at all. It was very funny. I opened all of his gifts and tried to show him what he got, but he just pushed each gift away. Instead, he played with a gift wrap roll for hours. His big items this year were a basketball goal, ball pit (early gift), tent, Little Touch Leap Pad and dvd player for his room. He also received many movies, including Finding Nemo, clothes, matchbox cars, etc., etc......

Today I am taking Jacob to an orthotist to be evaluated for a back brace and ankle-foot braces. We are hoping neither will be too uncomfortable for him, because they will both be very beneficial.

Well, I guess that is all for now. I will try to get some new pics up later today.

Much happiness and great health for everyone in the New Year!

Take care!
Love, Dennis, Amanda & Jacob

Tuesday, December 23, 2003 6:17 AM CST

***2*** days until Christmas! We are very excited and happy that Jacob is well. He got an early Christmas present - a ball pit; he loves it. His occupational therapist suggested that it would good therapy for his sensory integration dysfunction. He likes to lie down and have me cover him with the balls. Very cute! I posted a picture of him in it.

MERRY CHRISTMAS AND HAPPY NEW YEAR TO EVERYONE!!

Love, Dennis, Amanda & Jacob

P.S. Please sign Jacob's guestbook and visit his buddies:

www.caringbridge.org/hi/frombenjamin
www.caringbridge.org/or/javad
www.caringbridge.org/oceania/jack

Wednesday, December 10, 2003 9:51 PM CST

Hello everyone! Some of you may know that Jacob has been sick this week. It began with a mild fever on Sunday that quickly progressed to a pretty high temperature of 102.5. Because of the fever, his heart rate increases and his oxygen saturation decreases. Fortunately, we have what we need at home to take care of that - a ventilator and oxygen, and of course, tylenol. We also increased his breathing treatments to 4 times per day with Vest therapy. His doctor put him on Cipro, a very strong bacterial antibiotic.

The good news is that today he is doing fantastic. He is off the oxygen, but still on the vent. He has had a significant increase in secretions and the vent helps him to cope with it. No problem!! It is always better than having to go to the hospital. He was scheduled to see the doctor today, but I postponed until tomorrow due to inclement weather - Jacob definitely does not need to be out in the rain right now.

Other than this week, Jacob has been doing great. He is just like a sponge absorbing so much knowledge. Everyday he amazes us with what he does. His new thing is "quoting" one of his Bob the Builder movies. Although he doesn't talk, he signs some of the things they say even before they say it. It is quite funny to watch him. He now knows well over 30 signs and we are always trying to teach him new ones. And he is not shy when letting you know just how smart he is!

We are looking forward to Christmas very much. We are expecting Jacob to really enjoy it this year. Of course last year he was too young to care, although he was impressed by the boxes and paper.

We hope everyone has a safe and happy holiday season!

Take care,
Dennis, Amanda, & Jacob

P.S. I have two, new friends:

www.caringbridge.org/hi/frombenjamin/
www.caringbridge.org/or/javad/

Saturday, November 8, 2003 7:24 AM CST

Hello everyone! Sorry for not updating in so long. Jacob is doing fantastic - couldn't be better! Since the last update, Jacob has received a few new pieces of equipment. He first got a bath chair and he loves it; he can sit up and play in the tub now! He also got a Pony Walker (gait trainer) from his new buddy, Jack. Thanks Jack! He is doing really well in it and can push himself around the kitchen. Hopefully, by Chritmas, he will have a stander, which will help strengthen his legs and hips and he can walk even more. The last thing Jacob has received is the Vest, which I mentioned in the last update. We have been very hesitant to get this, but finally agreed and we are very happy with the results. His secretions have been cut down tremendously, and, the best part is that he is getting a very minimal amount of Robinul (medicine used to dry out secretions) now! He does have to wear the vest for 10 min, 4x a day. (We combine treatments and do 20 min, 2x a day!) But Jacob doesn't seem to mind it and actually laughs when I tell him that it is time to "shaky, shaky". He is very good boy.

Jacob's second birthday is quickly approaching - how time does fly! We hope to have big party like last year and we are also planning to take him, Uncle Dalton, and cousin Hailey to the Tampa aquarium. I think he will really enjoy that. I hope to see EVERYONE at the party!

Until next time, take care!

Love,
Dennis, Amanda, & Jacob

P.S. I also put up new pics!

Tuesday, September 23, 2003 6:03 PM CDT

Hello..long time, no update. Well, here goes: Jacob has been doing fantastic. He had a little cold a few weeks ago, but came through just fine. He is now wearing his Passy-Muir speaking valve pretty much all day. Unfortunately, he hasn't said any words yet; he just imitates certain sounds, like "uh-huh". We may have to get a speech therapist to help get him started. As if we already didn't have enough equipment, Jacob will be getting the Vest. The Vest is a chest therapy device that will help clear Jacob's lungs and help him get rid of secretions more easily. This will be especially helpful when he is sick. It was first used on him when he was hospitalized earlier this year and it worked very well. Right now we do manual chest therapy with a hand-held chest percussor. The Vest is much more effective.

Jacob is now receiving physical therapy once a week. We have always done a lot of exercises and activities with him, but we were losing direction with it. He is getting really big and difficult to maneuver, so I was happy to have a PT come help us. He is helping us get a stander to help Jacob spend more time on his feet. This will be great for his legs, hips, and muscles, as well as digestive and circulatory systems. Hopefully it won't be too long before we receive it.

Don't forget to check out the new pics I posted!

Love,
Dennis, Amanda, and Jacob

Wednesday, August 13, 2003 6:12 AM CDT

Hello everyone!! Just wanted to let everyone know how great Jacob is doing. First of all, he can now sit unassisted for about 60 seconds. This is just fantastic for him. Of course he likes to play a game where he falls back and I catch him, but that's okay. Pretty soon he will realize how much more fun he can have sitting up. Next, I want to share that Jacob is now wearing his speaking valve all day long, with no problems. We have struggled with him wearing for about 8 months now. It has just been back and forth, so we have never forced it. But all of the sudden, he is tolerating it quite well. Pretty soon he will be talking our ears off. This is also great because it helps tremendously with his copious secretions. As a matter of fact, I did not have to give him any Robinul (that helps "dry up" some of the secretions) at all yesterday. For those of you who know what a struggle we have had with controlling his secretions, you know how great this is.

I am still giving Jacob "real" food. He is not only doing great with it, but he is tolerating more and more at a time. He used to gag a lot when he was full, but he hasn't done so in over a week. I just try to keep him propped up (to promote proper digestion) and he seems to do well. Just no eggs for Jacob ;-) Luckily, so far, he seems to not be allergic to any other foods. I was scared for a while thinking I would have to put him back on formula.

I guess that is all for now. Jacob has a few doctor's appointments this month, so I will fill you all in on how those go.

I hope everyone has a great day.
Take care.

P.S. Happy upcoming birthday to Jacob's friend, Jack!! Go Jack - you big 1 year old! We love you!

Monday, August 4, 2003 4:35 AM CDT

Hello all!! I hope everyone had a great weekend. We did!! We hoped to be able to take Jacob swimming again, but it rained yesterday and he didn't feel well on Saturday. It seems that every time he starts getting new teeth, he gets a fever and just doesn't have a good day. We did, however, take a short trip to see Granny and Great-Granny. I am sure they enjoyed seeing him!!

Well, Jacob is almost completely off of his formula and is not getting any feeding throughout the night. He seems to be doing great on the "real" food, but he doesn't like eggs. He had a severe allergic reaction on Wednesday. I had to call EMS and after an epinephrine injection and a mega-dose of Benadryl, he was fine. I can only attribute it to an egg I had given him about 1 hour prior. Hopefully he doesn't have any other allergies, food or not.

I wish there was more to report, but there is really no new news. Jacob is fantastic. As of yesterday, he is officially 1 1/2 years old. Happy Birthday, Jacob!!

Take care and everyone have a great week.

Love, Dennis, Amanda, and Jacob

Friday, July 25, 2003 3:42 PM CDT

Happy Friday to everyone! Jacob is doing really well. He is getting so big - of course you all probably knew that. But, just in case, I will let you know that he is about 27lbs and a whopping 36 inches long! He is definitely going to be the tall kid in class. LOL. He is doing great with his new occupational therapist. She comes two times per week for 30 minutes each visit. That is about the length of Jacob's attention span for any one person. She is really working a lot with increasing his fine motor skills (which are already good). But if we can get those really good, they can be used to begin working on gross motor skills, i.e., sitting up, holding head up, throwing balls, etc. He is also using a baby walker now. He is a bit long for it, but he is trying to push himself.

We have decided to start giving Jacob real food instead of Pediasure. It will take more work, but it will be worth it. Anytime you can get fresh food instead of processed, it is always better for you. Right now he is getting about half and half. It is a gradual process of making sure he is getting the proper caloric and fat intake. We are also starting him on some liquid multivitamins and Co-Enzyme Q10. That is a naturally occuring substance in our bodies that works to produce energy. We will start with small doses and see if Jacob has an increase in energy.

Have a great weekend everyone!

Take care,
Love, Dennis, Amanda, & Jacob

Thursday, July 10, 2003 7:12 AM CDT

Hello everyone! I only have good news to share - we are all better. Jacob is 100% better. He is just his normal, happy self again. For those of you who didn't know, we have been teaching him sign language. He now knows the signs for mommy, daddy, i love you, more, good night, and "i'm smart", and he can identify several body parts. I bought him a Blues Clues signing video and he watches it everyday. He should be signing away in no time.

Now for the technical stuff: I took Jacob for blood work to have his calcium levels checked. The technician tried and failed twice to get a vein. They are just shot from all of the iv's he has had. So, we might try again with an ICU nurse in about 3 months. He also has an appointment with the orthopedist in August to have his spine looked at. I am going with the attitude of "no brace". I just know that would be so uncomfortable for him. We'll see!! He is also going to the Muscular Dystrophy Clinic next week and our local Fox station is supposed to be there. They are gearing up for the MDA telethon. SO - Jacob might be on TV - our little superstar! And finally, Jacob got a new occupational therapist. Her name is Danielle and Jacob really likes her. He isn't too good with strangers so I was surprised he warmed up to her right away. He even gave her kisses on the first visit. Some people wait months for those :-)

I hope everyone has a fantastic week and even better weekend. Take care and God Bless!!

Love, Dennis, Amanda, and Jacob

P.S. I will try to get some new pics up today or tomorrow.

Tuesday, July 1, 2003 6:53 AM CDT

Hello everyone. I hope everyone one is looking forward to a nice, long weekend and a very happy Fourth of July. We have all been really sick, so hopefully it will be passed before the weekend. Dennis and I have had very sore throats and congestion with headaches. Jacob seems to have a lot of congestion, which means A LOT more suctioning. We have been keeping him on CPAP most of the time. I took him yesterday to have blood drawn to check his calcium levels and they could not find a good vein. He has had so many iv's in his little body that all of his vessels are shot. Poor guy!! Today we are off to the pulmonologist for his monthly visit. He gets a monthly injection called Synagis. This keeps him from contracting RSV, a very serious respiratory virus that could be very harmful to him.

I hope everyone has a wonderful day.

Take care.
Love, Dennis, Amanda, and Jacob

Friday, June 20, 2003 8:31 AM CDT

Good day everyone. I hope everyone is wrapping up the work week and getting ready for the weekend. I have decided to add some pics of Jacob from when he was much smaller. I know some of you didn't see him (or still haven't) and I thought you would enjoy them.

So, Jacob is doing great. He has had a wonderful week. His secretions have improved, so that is always better for him and us. We haven't been able to go out much due to the inclement weather we are having, but maybe it will improve soon. Jacob just loves to go out for walks and take in some fresh air.

Thank you to all who have signed the guestbook. I will one day print it out for Jacob to read.

Take care.
Love, Amanda, Dennis, & Jacob

Monday, June 9, 2003 3:57 PM CDT

Hello everyone. Thank you again for all who have signed the guestbook. I am going to print it out one day for Jacob to read.

Jacob is doing pretty well. He got a larger trach tube size last week and he did great. It wasn't any worse than a routine trach change. There was a little resistance, but that was expected. He is a tough guy!! It has made a difference with his suctioning - we aren't doing it nearly as much, except for the late afternoons. I think it is this crazy weather we have in Florida this time of year. It gets really muggy and it really effects him.

He is having a great time in his Kid Kart. It makes it so much easier to go for walks with him and he loves it.

Take care.

Love, Dennis, Amanda, & Jacob

Saturday, May 31, 2003 6:22 AM CDT

Hi everyone! As you can see from the picture above, Jacob got his new Kid Kart wheelchair. Finally!! He absolutely loves it. Actually, what he loves is to be spun around really fast. It makes me dizzy just to watch.

He is doing really well. He is teething very badly right now, so he is having a lot of secretions, which mean lots of suctioning. I have kept him on the vent a few days to help him out a little. He also needs a larger trach tube size, so that also contributes to the excess secretions. Hopefully, we can have that in place in a week or two.

I was recently contacted by the owner of a website out of the UK that deals with all three forms of Myotubular Myopathy. She asked me to share Jacob's story and I agreed. There are many more pictures there if you are interested. The site is tonilouise.tripod.com/cnmjacob.html

I am always happy to share Jacob's story if I think that it may help or inspire someone else.

Take care everyone.

Love, Amanda, Dennis, and Jacob

Friday, May 23, 2003 7:29 AM CDT

Hello everyone. Thank you to all who have recently visited and signed Jacob's page. The comments are much appreciated. Jacob had his 15-month check-up at the pediatrician yesterday. He is now 25 lbs 4 ozs and 35 inches long - he is definitely going to be a basketball player!! Unfortunately he had to get a few vaccines, but he is a big boy. I am sure most of you have had the experience of getting your child's immunizations - not too fun. But we all know they are for the best. Jacob will be seeing an orthopedist to address his impending scoliosis. Because of his poor posture, his body is starting to twist a little and it is becoming more noticeable in his chest area. It is nothing to be concerned with at this point, just something to watch out for. He will also have a urine analysis and complete blood panel to check his sodium, calcium, and a few other things. This will determine if he is at risk for kidney stones. Overall, his pediatrician was very pleased and so were we. He commented on how strong he has gotten and how smart he is, but we all knew that :-) He will also try to find someone to help us teach Jacob sign language since we are not having much luck with using the Passy-muir speaking valve. Jacob just does not like that thing. But that's okay. I hope everyone has a great Memorial Day weekend. Be safe.

Love, Amanda, Dennis, and Jacob

Tuesday, May 6, 2003 10:07 AM CDT

I have great news everyone...Jacob will finally be getting his Kid Kart wheelchair in just a few weeks. Our insurance finally authorized it. Look out, here comes Jacob :-) He is doing wonderful. I am trying to teach him how to use the computer. He loves to push keys on the keyboard.
Take care.

Wednesday, April 30, 2003 2:10 PM CDT

Hello everyone...

Jacob went to his pulmonologist yesterday. He is very pleased with his current status. He is just getting so big. But he is also getting stronger every day. Check out the new photos...

Tuesday, April 22, 2003 11:01 AM CDT

I created this page to keep our family and friends updated on Jacob, but anyone is welcome to take a look. I hope everyone enjoys it, especially the pictures.
Currently, Jacob is doing extremely well. He was sick last month, but only with a cold and, fortunately, he was not hospitalized. We are now waiting on our insurance to approve a wheelchair for Jacob. But, knowing them, it could be weeks. He is still receiving OT once per week for an hour. He his getting very strong and well on his way to sitting alone. He can push himself up when his head is supported. He also puts pressure on his feet when held in a standing position.
Check out the pictures and please sign the guestbook.

Tuesday, April 22, 2003 10:15 AM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----