Yesterday was our annual visit to the Cleft Palate Clinic. Christopher saw the surgeon, speech pathologist and the audiologist.
The surgeon was plesed with how well Topher's palate looks. He was also pleased with how his speech sounds, no nasal-ness. This is really great news, since it means Topher will NOT need a second surgery to lengthen the tiny muscles of the throat. I am happy to not have another trip to the OR!
Christopher was in rare form yesterday. I think he knew it was his time to shine! He jargoned and babbled the entire time, as well as saying some real words. He also showed off his signing, and proved he knew what he was signing by pointing to objects and doing the appropriate sign. All of this was unprompted and spontaneous.
The speech pathologist was pleased and not concerned about our lack of professional intervention at this time. I told her what all we do, and she observed how Sarah and I continually talk to Topher and repeat back the correct way to say words. She laughed and said that is exactly what she would recommend we do.
The speech pathologist asked Sarah if having a little brother with Ds has caused her to consider going into any type of teaching or therapy profession. Sarah told her she wants to be a speech therapist. She was very informative and encouraging. We walked away with websites and the names of colleges, and were able to get good ideas for Sarah's highschool course plans.
Four years ago, I would have never dreamed one of my children would desire to be a speech therapist. Topher, in his own unassuming way, is an inspiration to everyone he comes in contact with.
Wednesday, March 30, 2011
Friday, March 18, 2011
RSV
We were plagued with what we origanally thought to be a bad cold here in the shoe. Seemed like the bigger children and Gene and I could not shake it. Then the little ones got sick.
First Josh, who was having retractions, but no wheezing. Strangest thing I ever saw. We were in contact with our family doctor, and giving nebulizer treatments, but it seemed to drag on for a while.
Then Trinity got sick, and was very sick. We had many sleepless night, Gene and I and Trinity. We even took a trip to the ER, only to be misdiagnosed, given meds that were inappropriate for her actual condition, and told she was not contagious. When we went in to our family doctor's office on Monday, they asked if the ER had tested for RSV. No, they did not; they did a chest xray and said she had bacterial pneumonia. No wonder the antibiotic did not help, the test for RSV that was done in the doctor's office came back positive.
Next, Christopher came down with it. We knew exactly what it was and how to treat by now. We were concerned about him, with his low muscle tone it is difficult for him to cough effectively. With the combination of nebulizer treatments, postural drainage and chest percussions, we were able to treat him at home. Our biggest battle was against dehydration. It is difficult on a good day to get Topher to drink enough, and when he is sick it is nearly impossible. But we managed to get some precious drops of fluid into him.
We are on the road to recovery now. I was watching my babies playing together and realized they had been sick for so many days that I had forgotten how beautiful they are. Their eyes are no longer dull and listless, but had a sparkle and shine to them again. Their cheeks are again rosey and dimpled with smiles. Yes, it is good to see them healthy again!
First Josh, who was having retractions, but no wheezing. Strangest thing I ever saw. We were in contact with our family doctor, and giving nebulizer treatments, but it seemed to drag on for a while.
Then Trinity got sick, and was very sick. We had many sleepless night, Gene and I and Trinity. We even took a trip to the ER, only to be misdiagnosed, given meds that were inappropriate for her actual condition, and told she was not contagious. When we went in to our family doctor's office on Monday, they asked if the ER had tested for RSV. No, they did not; they did a chest xray and said she had bacterial pneumonia. No wonder the antibiotic did not help, the test for RSV that was done in the doctor's office came back positive.
Next, Christopher came down with it. We knew exactly what it was and how to treat by now. We were concerned about him, with his low muscle tone it is difficult for him to cough effectively. With the combination of nebulizer treatments, postural drainage and chest percussions, we were able to treat him at home. Our biggest battle was against dehydration. It is difficult on a good day to get Topher to drink enough, and when he is sick it is nearly impossible. But we managed to get some precious drops of fluid into him.
We are on the road to recovery now. I was watching my babies playing together and realized they had been sick for so many days that I had forgotten how beautiful they are. Their eyes are no longer dull and listless, but had a sparkle and shine to them again. Their cheeks are again rosey and dimpled with smiles. Yes, it is good to see them healthy again!
Monday, March 14, 2011
Our New Hobby
We are learning how to spin yarn here in the shoe. Allura already knows how, but is not fond of teaching, so the rest of us are making feeble, but fun atttempts.
A momys friend told me about ordering from The Sheep Shed, so we were able to purchase some nice mill end merino fiber from there. It is very soft and much easier to spin than the mohair that was my first attempt. I am pleased with the order and with the service from The Sheep Shed. My order was at my front door in a matter of less than one week.
This is my very first attempt at spinning yarn. It is mohair, and I was told later that mohair was not a good "starter" fiber. I attempted to make a pot holder out of it, but it was even too pathetic for that. So, I am using it to embellish one of Trinity's soakers, and other odds and end things. I can't let my first attempt be for nothing:) Allura got a good laugh at my sad yarn, but I distinctly remember some that looked very similar coming from her hands when she was learning.
A momys friend told me about ordering from The Sheep Shed, so we were able to purchase some nice mill end merino fiber from there. It is very soft and much easier to spin than the mohair that was my first attempt. I am pleased with the order and with the service from The Sheep Shed. My order was at my front door in a matter of less than one week.
This is my very first attempt at spinning yarn. It is mohair, and I was told later that mohair was not a good "starter" fiber. I attempted to make a pot holder out of it, but it was even too pathetic for that. So, I am using it to embellish one of Trinity's soakers, and other odds and end things. I can't let my first attempt be for nothing:) Allura got a good laugh at my sad yarn, but I distinctly remember some that looked very similar coming from her hands when she was learning.
Wednesday, March 9, 2011
Six Years Ago Today
Six years ago today Josh had the first surgery to his right eye. Six years ago, we had to hand our baby boy over to a doctor we had only met a few days earlier.
We sat in the waitingroom for almost four hours for a surgery that was supposed to only take 3 hours.
Nothing prepared me, not even being a nurse, for the moment I saw my son after his surgery. He was like a pitiful newborn kitten, weak and frail looking, yet with a sturdiness of steel beneath the surface.
Nothing prepared me for the first night of caring for him in his delicate state, with the eye shield that was to protect his surgical sight. I sat with him on my lap, cradled on a pillow for most of the night.
Nothing prepared me for how he would look at the doctor's office the following day when the shield was removed and the eye examined.
And nothing prepared me for the long journey of watching for complications, the ups and downs of everything that goes along with PHPV.
Six years later, I am emotional remembering it all. Even when Josh is stable, which he currently is, PHPV and its co-diagnoses, is like something sinister lurking around the corner in the darkness. I feel like I can never let my guard down, never allow myself to take a break from being watchful, lest some complication crop up.
This is a picture of Josh when he was 2 days old, before we had knew what his diagnosis was, before he had any surgeries. If you look carefully, you can see the white/grey pupil.
The next picture is immediately after we were called back to recovery.
This Josh and me. How good it felt to have him back in my arms!
We sat in the waitingroom for almost four hours for a surgery that was supposed to only take 3 hours.
Nothing prepared me, not even being a nurse, for the moment I saw my son after his surgery. He was like a pitiful newborn kitten, weak and frail looking, yet with a sturdiness of steel beneath the surface.
Nothing prepared me for the first night of caring for him in his delicate state, with the eye shield that was to protect his surgical sight. I sat with him on my lap, cradled on a pillow for most of the night.
Nothing prepared me for how he would look at the doctor's office the following day when the shield was removed and the eye examined.
And nothing prepared me for the long journey of watching for complications, the ups and downs of everything that goes along with PHPV.
Six years later, I am emotional remembering it all. Even when Josh is stable, which he currently is, PHPV and its co-diagnoses, is like something sinister lurking around the corner in the darkness. I feel like I can never let my guard down, never allow myself to take a break from being watchful, lest some complication crop up.
This is a picture of Josh when he was 2 days old, before we had knew what his diagnosis was, before he had any surgeries. If you look carefully, you can see the white/grey pupil.
The next picture is immediately after we were called back to recovery.
This Josh and me. How good it felt to have him back in my arms!
Saturday, March 5, 2011
Sibling Compassion
Lately, Christopher and Trinity have become compassionate toward each other, to a degree that is unusual. At least, it seems unusual to me in comparison to how my other children were at this age. Don't get me wrong, they can still fight and squabble with each other. Their biggest cause for discord is when I hold one and not the other, this is especially distressing to Trinity. She is unhappy until she is on my lap as well.
But I have noticed something else, when they are seperated for nap and bedtime, Trinity cries. Christopher sleeps upstairs, and Trinity sleeps down in my room. When Christopher goes up to bed Trinity will stand at the bottom of the steps, on the other side of the gate, and cry.
Last night, as I was walking behind Christopher up the steps, Trinity was across the livingroom and began crying. Christopher turned to look for her and she was not at the bottom of the steps. He would not take another step, when I tried to coax him to continue, he first made himself stiff, when I persisted, he made himself limp. I had to pick him up to keep him from falling. He was not happy until he could see that "Kiki" as he calls her, was ok.
When Trinity falls, or bumps herself, Christopher is there to pat her and say, "Awww Kiki", til she smiles again.
Trinity is the same way with her big brother. If he is crying, she *needs* to be near him. If she can't be near him, she cries, as well. She will pat him on the back, too, when he cries.
I am amazed at this sweet special bond my two little ones have.
But I have noticed something else, when they are seperated for nap and bedtime, Trinity cries. Christopher sleeps upstairs, and Trinity sleeps down in my room. When Christopher goes up to bed Trinity will stand at the bottom of the steps, on the other side of the gate, and cry.
Last night, as I was walking behind Christopher up the steps, Trinity was across the livingroom and began crying. Christopher turned to look for her and she was not at the bottom of the steps. He would not take another step, when I tried to coax him to continue, he first made himself stiff, when I persisted, he made himself limp. I had to pick him up to keep him from falling. He was not happy until he could see that "Kiki" as he calls her, was ok.
When Trinity falls, or bumps herself, Christopher is there to pat her and say, "Awww Kiki", til she smiles again.
Trinity is the same way with her big brother. If he is crying, she *needs* to be near him. If she can't be near him, she cries, as well. She will pat him on the back, too, when he cries.
I am amazed at this sweet special bond my two little ones have.
Thursday, March 3, 2011
How Many?
How many? is a question I hear quite often.
How many children do you have? Really?
This is the question that leads into a whole list of "how many" questions.
How many rolls of toilet paper do you go through in a month? We go through about 30 rolls of toilet paper in a month. It is real easy, the beginning of every month I buy the biggest pack available, which happens to be 30 rolls. They must package it just for us!
How many loaves of bread does your family eat each week? We eat sandwiches for lunch almost every day, and it takes an entire loaf of bread to feed us all. So that would mean we eat 6-7loaves each week.
Along with the bread question, comes the milk. How many gallons of milk do we drink each week? This one really varies. If someone in the household makes chocolate chip cookies, we can go through almost a gallon of milk while enjoying them. Otherwise, I would say we go through about 1 gallon a day. Christopher is lactose intolerant and drinks Lactaid instead. He drinks about 1 1/2 gallons a week.
How many loads of laundry do you do each week? My goal is to do 4 loads of laundry each day. I don't always accomplish that goal. Generally, we do about 20 loads each week.
How many bedrooms do you have in your house? We have 5 bedrooms.
How many times a week do you vacuum? That varies. My goal is every other day. Sometimes, when the children are being extra messy, it gets done daily. When we are extra busy, well, we won't go there:)
I don't mind the curious questions. It is interesting for others, I'm sure, to know how we compare in many areas. Some items are hard to compare since we buy them in much larger containers than the average household, such as the gallon of shampoo and conditioner, that lasts us about 1yr.
We also get some nosey questions, ones that I don't answer, or I'll answer with a question. For instance, I was always taught it is not good manners to ask someone how much money they make. Yet people feel we are fair game for such a question. My mama was horrified when I mentioned this to her.
The big question inquiring minds want to know is: How many children are you going to have??! This is one I cannot answer. Only the creator of my children knows how many more He will special make just for me.
How many children do you have? Really?
This is the question that leads into a whole list of "how many" questions.
How many rolls of toilet paper do you go through in a month? We go through about 30 rolls of toilet paper in a month. It is real easy, the beginning of every month I buy the biggest pack available, which happens to be 30 rolls. They must package it just for us!
How many loaves of bread does your family eat each week? We eat sandwiches for lunch almost every day, and it takes an entire loaf of bread to feed us all. So that would mean we eat 6-7loaves each week.
Along with the bread question, comes the milk. How many gallons of milk do we drink each week? This one really varies. If someone in the household makes chocolate chip cookies, we can go through almost a gallon of milk while enjoying them. Otherwise, I would say we go through about 1 gallon a day. Christopher is lactose intolerant and drinks Lactaid instead. He drinks about 1 1/2 gallons a week.
How many loads of laundry do you do each week? My goal is to do 4 loads of laundry each day. I don't always accomplish that goal. Generally, we do about 20 loads each week.
How many bedrooms do you have in your house? We have 5 bedrooms.
How many times a week do you vacuum? That varies. My goal is every other day. Sometimes, when the children are being extra messy, it gets done daily. When we are extra busy, well, we won't go there:)
I don't mind the curious questions. It is interesting for others, I'm sure, to know how we compare in many areas. Some items are hard to compare since we buy them in much larger containers than the average household, such as the gallon of shampoo and conditioner, that lasts us about 1yr.
We also get some nosey questions, ones that I don't answer, or I'll answer with a question. For instance, I was always taught it is not good manners to ask someone how much money they make. Yet people feel we are fair game for such a question. My mama was horrified when I mentioned this to her.
The big question inquiring minds want to know is: How many children are you going to have??! This is one I cannot answer. Only the creator of my children knows how many more He will special make just for me.
Wednesday, March 2, 2011
The Lord Gives Sight to the Blind
Many months ago, when Josh was diagnosed with aphakic glaucoma, I sat down with my Bible to seek some comfort. It literally fell open to Psalm 146:8 "The Lord gives sight to the blind, the Lord lifts up those who are bowed down, the Lord loves the righteous."
I closed my Bible and put it aside. Many times since, my Bible has fallen open to the same spot. Many times I have pondered the meaning behind this. Not just the meaning behind the verse, but why God keeps drawing my attention to this verse. Josh was still struggling and I was still bowed down in worry over the health of his eye.
After Josh was born and was diagnosed with PHPV, we went to the elders in our church and had him prayed for and annointed with oil, as directed in James 5:14-15. We proceeded with our plans for Josh's surgery, not knowing if God would heal him an a supernatural way, or through the hands of a surgeon.
Gene and I sat in the waitingroom the day of surgery and laughed that we would not be surprised if the surgeon came out and said he doesn't know what happened, but the cataract is gone and the eye is perfectly formed, no need for surgery. We would be rejoicing about how powerful our God is.
But it did not happen that way. Josh still had his cataract when the surgeon went in, the eye still had PHPV. Josh has had numerous complications. The complication of aphakic glaucoma is the one we did not want to see develop, yet it did.
Did God let us down? NO! Is God still powerful? Yes! Is he still worthy of our praise? Yes!
All of those questions were easy for me to answer, no hesitation. But the question of why God continues to direct me to Ps. 146:8 continued to go unanswered. By all definitions Josh is has not been healed, or even cured. Yet, God has given him sight. If it were not for the technology God has made available, our son would be blind. If the surgery had not been performed, the contact been fitted, the healthy eye patched daily, the glaucoma drops administered twice daily, Josh would be blind.
Some would argue that it was man that caused Josh to see. I disagree. The human mind is nothing in and of itself. God is the one who revealed many wonders to man. God is the one who guided the surgeons hand, gave him the skills and knowledge to care for my son. God was the one who prompted someone to experiment with patching the healthy eye to make the diseased eye exercise and grow stronger.
Yes, "the Lord gives sight to the blind, and he lifts up those who are bowed down" (he even lifts up the mama who is bowed down with worry about her little son.)
*****Josh was seen by the pediatric ophthalmologist last week. With his contact lens and glasses his vision was about 20/32-20/40 in his eye with PHPV. The pressure in both eyes was great. (It had been creeping up in the previous visit, but was back down where it should be.) Blessed be the name of the Lord!!!
I closed my Bible and put it aside. Many times since, my Bible has fallen open to the same spot. Many times I have pondered the meaning behind this. Not just the meaning behind the verse, but why God keeps drawing my attention to this verse. Josh was still struggling and I was still bowed down in worry over the health of his eye.
After Josh was born and was diagnosed with PHPV, we went to the elders in our church and had him prayed for and annointed with oil, as directed in James 5:14-15. We proceeded with our plans for Josh's surgery, not knowing if God would heal him an a supernatural way, or through the hands of a surgeon.
Gene and I sat in the waitingroom the day of surgery and laughed that we would not be surprised if the surgeon came out and said he doesn't know what happened, but the cataract is gone and the eye is perfectly formed, no need for surgery. We would be rejoicing about how powerful our God is.
But it did not happen that way. Josh still had his cataract when the surgeon went in, the eye still had PHPV. Josh has had numerous complications. The complication of aphakic glaucoma is the one we did not want to see develop, yet it did.
Did God let us down? NO! Is God still powerful? Yes! Is he still worthy of our praise? Yes!
All of those questions were easy for me to answer, no hesitation. But the question of why God continues to direct me to Ps. 146:8 continued to go unanswered. By all definitions Josh is has not been healed, or even cured. Yet, God has given him sight. If it were not for the technology God has made available, our son would be blind. If the surgery had not been performed, the contact been fitted, the healthy eye patched daily, the glaucoma drops administered twice daily, Josh would be blind.
Some would argue that it was man that caused Josh to see. I disagree. The human mind is nothing in and of itself. God is the one who revealed many wonders to man. God is the one who guided the surgeons hand, gave him the skills and knowledge to care for my son. God was the one who prompted someone to experiment with patching the healthy eye to make the diseased eye exercise and grow stronger.
Yes, "the Lord gives sight to the blind, and he lifts up those who are bowed down" (he even lifts up the mama who is bowed down with worry about her little son.)
*****Josh was seen by the pediatric ophthalmologist last week. With his contact lens and glasses his vision was about 20/32-20/40 in his eye with PHPV. The pressure in both eyes was great. (It had been creeping up in the previous visit, but was back down where it should be.) Blessed be the name of the Lord!!!
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