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Sept. - the rest of the month!!!

So much happened this month. Both boys had ear infections, Mark's was especially bad. Mark had surgery on Sept.18th, to put tubes in both ears (the original one from the last surgery was messed up), and take his tonsils and adenoids out. He did very well on surgery day, but suffered post op problems. He is still recovering 10 days later.

Both boys have made progress in the area of development. Mark is crawling anywhere he wants to go, pulling up onto his knees, and pulling up to stand (with just a little help). Matthew is turning over onto his tummy and managing to get his arms out in front. He also has learned how to put some pegs in the peg board (with just a little help).
We were fortunate enough to learn about United Cerebral Palsy of Dallas' loaner program for equipment and toys. We are borrowing a corner chair, a tumble form, and 5 toys.

The nursing situation hasn't changed much. The agency is working diligently to find someone (there is a nursing shortage). Some weeks, we have had a nurse 2 days and sometimes 4. Things have gone pretty smoothly though on the days we don't have nursing.

I'll try to keep the updates coming this month - hopefully, on a weekly basis. Thank you for everyone's continued prayers for our family. God Bless...

Sept.2- Sept.8

This week was interesting. We ordered Matthew a customized wheelchair and a standing frame. The boys did very well in therapy on Wed. and Friday. Thursday, Mark saw the ENT in Dallas for his ears. His left ear is still pretty infected, and the tube appears to have fallen in. Most likely, we will repeat surgery to replace that tube, and to also insert a tube into his right ear. The doctor is also considering taking his tonsils out. We traveled to Dallas Wed, Thur, and Friday - just the boys and myself. My nurses were ill and could not work. The boys have an appt. with the pedi. on Monday, Sept. 10 (when they turn 20 months old).

Aug.27-Sept.1

This past week was busy as usual. Monday a.m., we took Mark to the pedi. He had an ear infection, and it appears his tube has fallen out of that ear. We did get to return to our normal breathing treatments and meds though. He had 2 extra meds this week for the ear infection and "thrush" in his mouth. We have been unsuccessful in weaning his oxygen requirements this week, maybe next week he'll do better!! Matthew is trying to cut several teeth, and therefore has been unusually fussy this week. He is continuing to improve with his developmental skills though.

This week, we visited a local early childhood learning center. The boys would be able to start when they are 3 due to their disabilities. They would be in PPCD, which is Preschool Program for Children with Disabilities. It is an option for us. We are still on a waiting list for a private school in Dallas just in case we have a location change before they turn 3.

Due to the rain, we had difficulty traveling to Dallas this week (3 days). On Friday, we finally had to just turn around and come back home. The roads were flooded and it was raining so hard we couldn't see. Thus, we had to cancel the boys' therapy for that day.

This weekend is to begin the boys' "homebound" status. Today is Sept.1. Until May 1, 2002, the boys will only be able to go outside (for strolls) and to appointments with therapists or doctors. The boys will not go to public places, or be allowed around children to prevent them from getting ill, specifically with RSV. They will receive shots every month to prevent them from getting RSV also. So, adults are welcome to visit the boys if they are well, haven't been around anyone ill, and they wash their hands upon entering our home. Hopefully, this will be the last fall/winter season that we have to endure this isolation. But it will be worth it come Spring if Mark is able to get his trach out, and the boys have stronger lungs from being well for a long period of time. Pray the boys don't get sick!!

Aug.3-Aug.25

So much has happened these past few weeks!! We sold our home and moved to one half the size across town. We have been going to therapy in Dallas at least 2 times a week. Most weeks, we end up going to Dallas an extra day for a doctor appt. The boys are doing pretty well. They are making big strides in their development. Mark is very close to crawling and has just about finished cutting all of his baby teeth. Matthew is holding himself up better than ever, and is making a lot of progress in his fine motor and oral motor skills. He still only has 6 teeth. The boys actually weighed the same when they turned 19 months old on Aug. 10 - both 25 pounds. However, Matthew is 3 inches taller (therefore, thinner) than Mark. Mark has had some changes in his meds., feed, and breathing treatments recently. Also, a recent echocardiogram revealed an abnormality in his heart. We are waiting to talk to the doctors on Monday, Aug. 27 to find out more. Overall, we are doing great! Thank you to all that continue to pray for our family.

Weekend July 28- Thursday, Aug.2
The boys are doing so very well. We went to see their grandparents (Jennifer's parents) over the w/e. It was our first overnighter since Mark came home in March. I'm glad we have a surburban - and was it full of medical equipment and baby stuff!!! On our return trip, we visited a school for disabled children in Dallas. It serves children with a range of disabilites, ages 3 -6. The boys are not quite 2, but we are putting our names on the waiting list in eager anticipation. The children receive therapy while at school from physical, occupational, and speech therapists. The staff was excited to meet the boys. Then, we went over to OCH for therapy. Matthew is in aquatic therapy again. He put his face in the water!! I'll take some pictures soon and put them on the webpage. Mark is receiving some help with his feeding. He accepted an empty spoon several times, and even allowed a few tiny bites of pudding into his mouth!! At home, three times a day, we'll be putting him into a high chair and work on his eating. I hope to post some new pictures on the webpage soon. You won't believe how big the boys are getting!!

Weekend July 21,22
Mark is improving quickly. He has reduced his oxygen requirement to only 3/4 liters per minute. We are doing breathing treatments every 6 hours now (instead of every 4). He is still continuing the 3 extra medicinal treatments daily, and taking his antibiotics. He has cut another tooth and is rolling over and pushing up. It won't be long until he'll be crawling!!!

Matthew is doing well. Some days he holds his head and torso up very well. He is a happy little boy. No more new teeth just yet.

Thursday, July 19
Mark seems to be feeling better. He is still on quite a bit of oxygen, on antibiotics, his regular meds, and is on breathing treatments every 4 hours. He also gets 3 additional breathing treatments a day with other meds to keep him strong until he can fully recover from his recent illness. Matthew is glad to be back home and is feeling fine. Whatever Mark had must have not been contagious.

Friday, July 13 - Wednesday, July 18
Mark was hospitalized at Children's Medical Center in Dallas. They were concerned about the high fever all week. Several tests were run and xrays taken. They diagnosed pneumonia and a possible gastro virus.

Thursday, July 12
Mark is still running a fever. His white blood cell count is elevated even after 3 shots of a strong antibiotic.

Wednesday, July 11
Overnight, Mark's temp. went up to 103.7 even though we've had him on Motrin and Tylenol. His temp. did eventually come down to about 100/101 during the day. He received his second shot of a strong antibiotic to fight whatever might be "brewing".

Tuesday, July 10
The boys are 18 months old today!! This morning we went to our pedi. for a follow up to our hospital visit. However, it turned into an exam due to Mark running a fever. He had some blood work done - his white blood cell count is elevated. This afternoon, we went back to the pedi. to receive an antibiotic shot to help him fight whatever is wrong. He shows no signs or symtoms to explain the elevated blood count or fever.

June 30 - July 8
Mark was a patient at Children's Medical Center in Dallas. They treated him for his respiratory distress thought to possibly be pneumonia.

Friday, June 29
After receiving breathing treatments every 3 hours all night, Mark is still having some difficulty. He is beginning to wheeze and work harder to breathe after only 2 hours since a treatment. This afternoon, I drove Mark and his recent chest xray to see our pulmonologist in Dallas. He prescribed more meds and gave us the opportunity to hospitalize him for further labs, xrays, and tests. We chose to bring him home and try to start the new meds. However, because we haven't been able to get any help with nursing at night, we will probably go ahead and hospitalize him on Sat. He just doesn't seem to be getting better, we're tired, and he can get some testing done now (we would have to wait until august to reschedule the upper g.i.). I think it would give us some peace of mind if the medical professionals at Children's took care of him for a few days to assess everything that is going on. So, I won't have time to put any more info. here for a couple of days. I'll update it later in the week.

Thursday, June 28
Mark seems to be feeling a little better. He's still requiring more oxygen than usual. He is also producing more secretions. Thus, we are doing breathing treatments every 3 hours all night. Now, I wish I had nursing at night!!

Wednesday, June 27
This a.m. I took Mark to the pedi. He has a bad ear infection in his right ear (one w/out the tube). We also did a chest xray, trach culture, and some blood work. We've increased his meds, breathing treatments, and added an antibiotic. He weighed in at 21 pounds, 14 ounces.

Tuesday, June 26
This morning I found a few bargains with the boys at the outlet mall. They now have a few matching outfits in their size - 24 months! I had to get Matthew some sleepwear also. He's now in a 2T because of his length. This afternoon, Mark started pulling on his right ear, and was having some respiratory problems. We'll go to the pedi. in the a.m.

Monday, June 25
The weekend was tiring, but the test revealed that perhaps the pulse oximeter is not always giving an accurate reading. Thus, the pulmonologist thinks Mark's doing fine respiratory-wise. However, he wants to check Mark's digestive tract just to be sure there is not a problem there. So, we will go to Dallas on Sunday to stay with relatives to be able to get to the hospital first thing Monday, July 2, morning to get an upper GI for Mark. Also, the pediatrician is working on getting Matthew in at the same time (or close) to do a video swallow test to see if he's aspirating his milk with his feeds. Our speech therapist this past Friday recognized he tends to get congested when eating, and she suggested we consult our pediatrician. So, hopefully next week we'll receive some insight into what's happening with the boys. Today, they both seemed to be feeling fine. We just hung around the house and played. Tomorrow we might get out just a bit for a change of scenery!!!

Friday, June 22
This morning the boys went to see their pediatrician in Sulphur Springs. Matthew was 24 pounds, 1 ounce and 34 inches long. Mark was 21 pounds, 2 ounces and 31 inches long. Mark's size 4 foot is gaining on Matthew's size 5!!! The boys both received immunizations, and Matthew had some blood work done (routine). Mark has been requiring more oxygen, and we've been having some difficulties with our equipment lately. So, our pedi. suggested we call our pulmonologist, who subsequently ordered a 48 hour study on Mark for the weekend. He is on oxygen 24 hours a day, and is hooked up to 2 pulse oximeters. We are to report our results on Monday morning. I'll write later in the week with what is determined to be going on. Matthew might possibly go in for some testing also. We'll see next week what happens!! For now, we plan to have a great w/e just hanging around the house.

Wednesday, June 20
The past few days we've just hung out at home. However, tonight we went to the First United Methodist Church (where Jennifer and Craig have gone the last 2 Sundays)ice-cream social. The boys were of interest to everyone. Matthew sat back and took it all in from the stroller. On the other hand, Mark had to get out and be "in on the action". They both enjoyed watching the other kids play in the swimming pool.

Weekend of June 16 & 17-
On Saturday, the boys went down to Arlington for a day with aunts, uncles, a cousin, and grandparents. We spent some time in the pool. We'll post some pictures as soon as they are developed. On Sunday, we celebrated Father's Day. This was the first one for Craig with both boys home. Sunday night, we all actually slept soundly. I did not have to get up for either boy from midnight to 6 a.m. This is a great feat!!! Mark has been stable enough, and our machines have been cooperating, that he didn't alarm all night. His last breathing treatment is done at 11 p.m. Matthew has been such a good boy to sleep through the noise we make in there at 11, and then continues to sleep despite his brother kicking the bed and tossing and turning (normal behavior for Mark). Hope everyone has a great week - we will!!!

Thursday, June 12
This morning we went to Dallas at 9 a.m. for a follow up appointment with our pediatric ENT. Mark's surgical area is healing well. The doctor retested his hearing. Mark is still experiencing some difficulty hearing low sounds in his right ear. We will go back to retest in 3 months. The boys were very good. We managed to get back home about 2 p.m., thankfully before the bad weather hit in the evening.

Tuesday, June 12, 2001
This morning we departed home at 9 a.m. The twins, our nurse Brenda, and Mom, visited our friends the Bairds in Dallas. They are the generous family that opened their home to Matthew and I from Aug 2000 - Mar 2001. Afterwards, we headed over to Our Children's House for our check up with Dr. Gelfand, our pulmonologist. Mark's chest xray had shown improvement, his blood work was good, and he is finally gaining a little weight and getting a little taller. The doctor discontinued one of our bronchodilator medications, reduced our breathing treatments to just three times a day, and said we can just do 4 spot-checks during the day on the pulse oximeter while Mark is awake and playing with supervision. Mark has been able to tolerate no oxygen at all during the day, with the exception of his naptime. He still requires about 1/8 liter per minute at night with his soft air compressor. Mark weighed in about 20 pounds, and about 29 inches long. (They let us weigh Matthew too - 24 pounds!) We returned home about 5 p.m.

May/June background info.
May 11 - moved to new town of Sulphur Springs
May 18 - Jennifer turns 30, Mark sits up for the first time by himself
May 21 - Mark rolls completely over by himself
May 30 - Mark has 5th surgery, this one removed some tissue from his trach stoma and they inserted a tube in his left ear for drainage
June 1 - Early Childhood Intervention Evaluation of the boys revealed they are performing at about the age in months listed for each category (16 months old at testing):
Cognitive - Matthew 8, Mark 10
Communication - Matthew 8, Mark 3
Social/Emotional - Matthew 12, Mark 7
Physical - Matthew 5, Mark 7
Adaptive Behavior - Matthew 13, Mark 3
June 6 - Jennifer's grandfather passed away at the age of 91
June 10 - the boys are 17 months old; Matthew has 5 teeth, Mark has 11 teeth (including 4 molars)