I have moments of fear, from time to time, that I am inadequate when it comes to teaching my son, Christopher, who has Down syndrome. I worry that maybe I am not giving him enough of everything that he needs. Yes, I had those fears with regarding my other children, but nothing to the degree that I do with Christopher. And you know what? I cannot give any of my children everything they need. Only God can do that! God is the one who equips me to do everything he thinks I need to do.
I know that fear does not come from God, it comes from the enemy. I have to keep reminding myself of this fact! God has not given me a spirit of fear.
It is hard, especially when all the books and websites say that I should be sending Christopher to special preschool, PT, OT and ST. Who am I? Just his mom, with no college degree, just my little LPN. I specialize in nothing.
But because I am Christopher's mom, I have have a greater investment of love in Christopher, that no paid stranger could ever have. Because of that love, I keep him busy, working on those gross motor skills. I also help him with activities that will strengthen those tiny muscles to improve his fine motor skills. We sing, we talk, we read books, we counts, we play with blocks, we play with flurp and kazoos.
Many of the little things that I did with my other children, without thinking, are now planned out and done with intent with Christopher.
Christopher can now count to five! He is using many signs and word approximations, and actual words. He is learning to recognize a couple word flashcards, and will say and sign the words. Yes, he is learning to read! Little by little!
Most of my children did not read any words at the age of 4 1/2yo. They could speak clearly, though. Christopher can read a couple words, but cannot speak clearly:)
Christopher is not showing any signs of being ready to potty train, he does not enjoy sitting on the little potty. I am hoping as Trinity begins to potty train that he will want to, as well. In the meantime, he continues to wear his big size 6 diapers.
There are times that I think I should see progress each day, rather than looking for progress over a longer span of time. So, as I look back at the last few weeks, I see things that Christopher has learned, or has fine tuned. Things like being able to string noodles, using a big tapestry needle. He could do that for a while, but lately, he has discovered the best way to hold the needle and can quickly fill the entire string.
Little by little, day by day, he is learning, just like my other children:)
Thursday, September 29, 2011
Saturday, September 24, 2011
Another Day Out With Thomas Event
My oldest daughter, Crystal, and I took "our boys" to see Thomas the Tank at the Strasburg Railroad yesterday. I am glad I had left Christopher back at the shoe with Daddy and Trinity, since it poured rain almost the entire time. He would have been miserable, and most likely would have ended up very sick.
Crystal brought her boyfriend, Patrick. On the way there, my boys were making plans about who was going to get to hang out with Patrick the most. I had to remind them that Patrick would probably like to hang out with Crystal the most. They did not think that sounded like much fun. Oh, well, they will understand someday. Patrick fits in well with my sons, a little too well sometimes. It is never a dull moment.
In spite of the rain, we had a good time and were able to ride most rides. Aaron got to have his first experience on the pump car. He and Crystal went on it together. Crystal was very out of breath when they got off the car, Aaron, not so much. Not too bad for a boy who almost died two months ago.
The boys, including Patrick, rode the cranky cars. We also rode the Little Cagney. And of course, the train pulled by Thomas:)
Patrick likes to encourage the boys to make silly faces for the pictures, then he straightens up just as the picture is being taken, leaving, mostly Jesse, the one on the right, to still be making a goofy face.
Aaron, Josh, Patrick, Jesse (with the goofy face) and Seth.
Crystal is completely oblivious to the goofy face Patrick is making. She thinks we deleted this picture:)
He can be serious when he has to be. This is after many attempts for one decent shot. Crystal would not allow him to do the bunny ears behind her head. Such a stick in the mud:)
Crystal brought her boyfriend, Patrick. On the way there, my boys were making plans about who was going to get to hang out with Patrick the most. I had to remind them that Patrick would probably like to hang out with Crystal the most. They did not think that sounded like much fun. Oh, well, they will understand someday. Patrick fits in well with my sons, a little too well sometimes. It is never a dull moment.
In spite of the rain, we had a good time and were able to ride most rides. Aaron got to have his first experience on the pump car. He and Crystal went on it together. Crystal was very out of breath when they got off the car, Aaron, not so much. Not too bad for a boy who almost died two months ago.
The boys, including Patrick, rode the cranky cars. We also rode the Little Cagney. And of course, the train pulled by Thomas:)
Thursday, September 15, 2011
Aaron's EGD
Aaron had the scope put down into his esophagus on Tuesday.
The day started off frustrating. Our van left is sitting after getting gas. Thankfully, a kind man gave it a jump and we were able to pull it out of the entrance of the store parkinglot. But I was leary about driving another 30minutes and having it cause more trouble further away from home. My oldest daughter, Crystal, had plans that fell through that morning, so I called her. She came and got us, and waited with me while Aaron had his procedure done.
When we got into the surgical center, I mentioned that I had discussed with the pre-anesthesia nurse that we were not comfortable with him having Propofal, and she had assured me that there were other options for anesthesia. Well, the anesthesiologist came in and said there weren't really any other options, since it was not in the main hospital. He said that whoever had reviewed Aaron's chart had cleared him for Propofal. He was gracious enough to go searching for something else, but made no promises about finding anything. I sat there, feeling the anxiety rising, feeling like I could not trust them. He returned after a while to tell me he found another medication and we were set. Praise God!
The scope showed that Aaron has strictures at the bottom of his esophagus, consistent with longterm acid reflux. He asked if Aaron had complained about burning or pain in the past. No, never, not until after his illness in July. I have always described Aaron's appetite and eating to that of a rottweiler puppy, gobble it down and look for the next bowl. He also questioned how Aaron was as a baby, less than 1yo, if he spit up a lot. Yes, he was a horrible spitter. He would spit up hours after nursing, and it would be the consistency of sour cream.
The GI doctor thinks what happened is that Aaron has been having reflux, possibly since he was a baby, which caused some scar tissue to build up. Then, when he was sick in July, the excess vomitting, and then the NG tube, caused the scarring to become worse, making the opening more narrow, til it was too small to allow larger peices of food and medication to pass through.
The plan: They will be stretching his esophagus at a later date. They could not do it on Tuesday, since they needed to do biolpsies, to check for eosinophilical esophegitis (which was negative). They also increased the frequency of Prilosec.
We are thankful it was not neurological damage.
The day started off frustrating. Our van left is sitting after getting gas. Thankfully, a kind man gave it a jump and we were able to pull it out of the entrance of the store parkinglot. But I was leary about driving another 30minutes and having it cause more trouble further away from home. My oldest daughter, Crystal, had plans that fell through that morning, so I called her. She came and got us, and waited with me while Aaron had his procedure done.
When we got into the surgical center, I mentioned that I had discussed with the pre-anesthesia nurse that we were not comfortable with him having Propofal, and she had assured me that there were other options for anesthesia. Well, the anesthesiologist came in and said there weren't really any other options, since it was not in the main hospital. He said that whoever had reviewed Aaron's chart had cleared him for Propofal. He was gracious enough to go searching for something else, but made no promises about finding anything. I sat there, feeling the anxiety rising, feeling like I could not trust them. He returned after a while to tell me he found another medication and we were set. Praise God!
The scope showed that Aaron has strictures at the bottom of his esophagus, consistent with longterm acid reflux. He asked if Aaron had complained about burning or pain in the past. No, never, not until after his illness in July. I have always described Aaron's appetite and eating to that of a rottweiler puppy, gobble it down and look for the next bowl. He also questioned how Aaron was as a baby, less than 1yo, if he spit up a lot. Yes, he was a horrible spitter. He would spit up hours after nursing, and it would be the consistency of sour cream.
The GI doctor thinks what happened is that Aaron has been having reflux, possibly since he was a baby, which caused some scar tissue to build up. Then, when he was sick in July, the excess vomitting, and then the NG tube, caused the scarring to become worse, making the opening more narrow, til it was too small to allow larger peices of food and medication to pass through.
The plan: They will be stretching his esophagus at a later date. They could not do it on Tuesday, since they needed to do biolpsies, to check for eosinophilical esophegitis (which was negative). They also increased the frequency of Prilosec.
We are thankful it was not neurological damage.
Saturday, September 10, 2011
Another Birthday!
We celebrated Aaron's 12th birthday today! His birthday was actually on the 7th, but we had his party today. What a blessing to be able to celebrate his day of birth after facing the possiblity of mourning his death. I am in awe of the greatness and power of our God!
On Wednesday Aaron and I sat and looked at his baby pictures. He was such a cute baldy baby. He weighed 8lbs 8oz at birth, and was one of my smaller babies. Before his illness he was always hungry, he never lost weight, as many newborn babies do, but gained right away. After his initial weight, he was always on the large side, or off the top of the growth charts. When I look at him today, my 5'5" son, I am amazed that he was once my tiny son:)
When I think that only a few short weeks ago he was in renal failure and cardiac arrest, and is now almost back to perfect health, I am amazed. We were so close to losing him, and now we are back to chasing him down to do chores and schoolwork again.
Thank-you, Lord, for sparing Aaron's life!
Sorry, not the best pic. My cell phone is picky about lighting, and Aaron seems to blink in every pic lately:)
Sarah, 14yo sister, thought it would be funny to put all those extra pink candles on Aaron's cake. I am surprised it did not set off the smoke detectors when he blew them out!
On Wednesday Aaron and I sat and looked at his baby pictures. He was such a cute baldy baby. He weighed 8lbs 8oz at birth, and was one of my smaller babies. Before his illness he was always hungry, he never lost weight, as many newborn babies do, but gained right away. After his initial weight, he was always on the large side, or off the top of the growth charts. When I look at him today, my 5'5" son, I am amazed that he was once my tiny son:)
When I think that only a few short weeks ago he was in renal failure and cardiac arrest, and is now almost back to perfect health, I am amazed. We were so close to losing him, and now we are back to chasing him down to do chores and schoolwork again.
Thank-you, Lord, for sparing Aaron's life!
Sorry, not the best pic. My cell phone is picky about lighting, and Aaron seems to blink in every pic lately:)
Sarah, 14yo sister, thought it would be funny to put all those extra pink candles on Aaron's cake. I am surprised it did not set off the smoke detectors when he blew them out!
Thursday, September 1, 2011
Ophthalmology Visits
I feel excited to be able to blog about something other than Aaron's illness, even if it is about other children with doctor visits.
Josh, Christopher and Sarah had appointments with Dr. McManaway today.
Sarah was being seen as a follow-up for the corneal abrasion Christopher gave her in June. She is back to normal. He did a complete exam, and does not need glasses. She does not need to go back unless she gets gouged in the eye again:)
Christopher had his annual eye exam. He did well. There has been no change in his vision, not better, but not worse. The nystagmus, however, is gone! He had developed that before he was 1yo, and it is finally resolved.
Josh had a follow-up for his PHPV and aphakic glaucoma. His IOP was stable. He will continue to use his two eye drops for glaucoma. His vision is stable, no changes in his contact lens or glasses prescription. He will continue to patch his left eye two hours each day.
But his right eye is beginning to drift in and up again. We go back in three months for Dr. M to have a look at it again. Somewhere along the line he will probably need another surgery to straighten it, but not yet. (I am not eager to go through another child having anesthesia, so I am happy Dr. M wants to wait a while.)
Trips to Hershey really take a huge bite out of my day, but it is so worth it to have the peace of mind that my children are getting the best care available.
Josh, Christopher and Sarah had appointments with Dr. McManaway today.
Sarah was being seen as a follow-up for the corneal abrasion Christopher gave her in June. She is back to normal. He did a complete exam, and does not need glasses. She does not need to go back unless she gets gouged in the eye again:)
Christopher had his annual eye exam. He did well. There has been no change in his vision, not better, but not worse. The nystagmus, however, is gone! He had developed that before he was 1yo, and it is finally resolved.
Josh had a follow-up for his PHPV and aphakic glaucoma. His IOP was stable. He will continue to use his two eye drops for glaucoma. His vision is stable, no changes in his contact lens or glasses prescription. He will continue to patch his left eye two hours each day.
But his right eye is beginning to drift in and up again. We go back in three months for Dr. M to have a look at it again. Somewhere along the line he will probably need another surgery to straighten it, but not yet. (I am not eager to go through another child having anesthesia, so I am happy Dr. M wants to wait a while.)
Trips to Hershey really take a huge bite out of my day, but it is so worth it to have the peace of mind that my children are getting the best care available.
Some Follow Up
Aaron had an Upper GI with a baruim tablet last week. They wanted to see how his esophagus was functioning. The radiologist was a bit puzzled. The tablet sat at the bottom of the esophagus for 10 minutes before it dropped down into the stomach. There was nothing there to have caused the tablet to not pass right through.
So, that means he will need an EGD on September 13th. He will be under anesthesia for this procedure, so that has me a bit concerned.
Aaron also had blood work done this week. His CBC and BMP were fine. He has completely recovered from renal failure and cardiac issues.
His final Lyme test was negative, like the two previous tests. So, we officially know what did NOT cause Aaron's illness. They mystery of what caused our son to be so seriously ill may never be solved, and remain unknown to all but the One who created him.
Aaron is doing well. We are getting back to "normal" life. He is doing school work, and trying to see how much he can procratinate. Very typical for Aaron:) His sore on his bottom is slowly healing, much better than it was, but not healed yet. So he is enjoying getting to go around in his PJs and boxers when we are home.
He is looking forward to taking his hunter's safety course this fall, and hopefully going hunting for the first time.
Oh, and he is enjoying doing the goofy eyes whenever he wants.
So, that means he will need an EGD on September 13th. He will be under anesthesia for this procedure, so that has me a bit concerned.
Aaron also had blood work done this week. His CBC and BMP were fine. He has completely recovered from renal failure and cardiac issues.
His final Lyme test was negative, like the two previous tests. So, we officially know what did NOT cause Aaron's illness. They mystery of what caused our son to be so seriously ill may never be solved, and remain unknown to all but the One who created him.
Aaron is doing well. We are getting back to "normal" life. He is doing school work, and trying to see how much he can procratinate. Very typical for Aaron:) His sore on his bottom is slowly healing, much better than it was, but not healed yet. So he is enjoying getting to go around in his PJs and boxers when we are home.
He is looking forward to taking his hunter's safety course this fall, and hopefully going hunting for the first time.
Oh, and he is enjoying doing the goofy eyes whenever he wants.
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