The last few months have been stretching, challenging and to be honest exhausting.
When given the diagnosis that your child has a genetic syndrome and will require extra care and will have extra needs, you unwittingly step onto a ride that you have never imagined you could handle.
It's that ride that you board with a pit in your stomach, unsure of your ability to cope while racing up and down tracks at a breakneck speed, and you know that as soon as you have that seat lock click into place on your lap, there is no going back. You are now on. Regardless of your lack of confidence in yourself, your jumbled thoughts of but what if I get hurt, what if I vomit on the person next to me, what if I am so traumatized by the intensity of the ups, downs and upside downs, that I don't want to experience the rest of the park after this!? Then, the ride begins, slowly at first, time to still be "thinking" far too much about what is about to happen, you want to be sick. But then you take off so quickly that you no longer have the luxury of contemplating what's before you. Your adrenaline kicks into high gear and you go with it - wherever the ride decides to take you! Just when your adrenaline is at it's peak the ride begins to coast, you catch your breath and think to yourself, wow, I did it and I'm alive and I'm going to be ok! The only problem is, as soon as you allow yourself to breath, the next loop knocks the wind right out of you and you are back in thick of the intensity and unknown.
There's a flaw in this analogy however, I have yet to meet a person who has ever remained on the roller coaster at the amusement park for life. Yes, people may LOVE the ride and go on multiple times, but their body understands that this is a once in a while experience. They could never build up enough tolerance to the point where they can withstand the ride for the rest of their lives.
That is the part that is dramatically different for parents with children with special needs. We are on the ride, but it keeps going and going and going and we stay on it for life! While on this ride, I believe in a loving God who has given us 3 amazing and unique children. I believe he blessed us with a child with special needs to teach us His heart. I see it as my calling in life, to raise my children regardless of their needs, according to His heart and his amazing plan! I will do whatever is before me because I trust God's plan and love for me. His plans for me to prosper and not harm me. So, I don't jump off the ride in fear, however, I do experience those same emotions and highs and lows as I described in the analogy of the roller coaster.
That was an incredibly LONG introduction to what I wanted to share tonight! We were blessed with about 5 months of health for Asher from May to the end of September. This was a record! We enjoyed the blessings of health and the freedom it brought to our family. We remembered what being social was, attended church, summer vacations and we had a chance to sleep! Our bodies were weary from the 3 years of on and off again medical crisis' and constant unknowns. It felt absolutely amazing to rest during that "coasting" phase.
Asher began nursery school in September 2 mornings a week and he loves it! It's been so wonderful to see him progress and develop while interacting with peers. Even with sickness going through the classroom, he stayed healthy! But at the end of September he had a Urinary Tract Infection (UTI). We knew that he was considered high risk for UTI's since his birth (one of the side effects of malformations to do with CHARGE syndrome). To make the story shorter, he has had 5 UTI's or 1 long one that has not cleared up and 5 courses of various antibiotics since Sept. 29! These UTI's are affecting how much he eats and he loses weight while sick. Growth is another serious concern and can be related to CHARGE, so we have regular follow up at the dietitian to try to help Asher gain weight and grow taller. He is on a high fat, high calorie diet and even at that it remains an uphill battle for him to grow.
We had our regular "follow up" appointment today with Asher's paediatric urologist in London. He has been on Asher's team of specialists since he was 3 months old. We usually wait many hours for 3 minutes of his time. Today, we didn't wait at all, however, we ended up with the typical 3 minute visit.
He told us he doesn't feel the UTI's were being caused by his "structural" differences and that he doesn't really have an answer other than he wonders if he is toilette training himself and holding his urine which is causing the infections. He tells us we need to somehow get more liquid into him and potty train him. Also he wants him back on a daily dose of antibiotics (something he was on as a baby) to prevent the UTI's. I said but we can't get much more volume into him and he is on thickened liquid so that he doesn't aspirate. He said do your best. And that was that.
I called our dietitian after that to figure out if she had any suggestions. We don't want to increase his volume of liquids at the expense of him not wanting to eat solids! That would be complete regression at this stage. He is very rarely hungry and it's already a struggle to get enough calories into him in a day let alone more volume! She was very disappointed with me that we didn't really have a clear answer today, and could only come up with one suggestion. She said "you're going to hate me for saying this, but this is why so many children with CHARGE are tube fed, because it's so hard to get enough into them. I think the only option at this stage is to give him at least one middle of the night drink and hope he goes back to sleep." She said he wasn't to the point yet where he needs a G-tube (tube in the stomach) but this is the challenge and balance.
I wanted to cry. For 3 years we have known the "threat" of a tube fed child always loomed over us. We wanted him to be 100% orally fed with the knowledge that if he needed a tube then of course we would do what was best for him. But at 3 years old, to give him a bottle (he has not been willing to transfer to a cup and at the stage we can't do anything about that development right now - getting the liquid into him is far more important) in the middle of the night just seemed overwhelming and sad - especially when we don't always get the sleep we require now as it is because of Asher's sleep interruptions. It felt like that time of coasting had truly changed back to "crisis management".
As I did dishes alone tonight I put on Take Heart - Hillsong United. I closed my eyes and while tears were fighting their way out, I just sang and prayed. I know that He is taking care of us even when we are yet again faced with the unknown.
This is an extremely long update. Thank you for bearing with me as I got all of this out.
http://www.youtube.com/watch?v=UbkO5o7C8jc
Wednesday, December 11, 2013
As Asher begins Preschool next week and turns 3 next month, I have been reflecting on his precious life.
Remembering each stage of the last 3 years reminded me how much we have been through.
The Loving
We have fiercely cared for and sheltered our third child in a way that now feels “normal”. We have been careful to protect him from unwanted illness and risks. We have held him in our arms while he endures countless tests and procedures. We have responded to his slightest sighs and loudest screams with speed and efficiency to the point that we can anticipate almost all of his needs without words. We have held cold cloths to his head during fevers and held his hands while he struggled to walk. We have rushed to the hospital(s) during the darkness and cold of night as his heart raced or his chest was in-drawing as he gasped for air. We have watched as his various surgery scars have faded to light pink from dark red.
The Prayers
We have prayed in confusion when facts were so unclear. We have whispered prayers of fear during hours of open heart surgery. We have prayed prayers of thanksgiving when our son survived cardiac arrests. We have cried prayers of pain when the unknown of life was too much to bare. We have shouted prayers of frustration when home and wholeness didn’t seem close enough. We have held prayers of hope deep in our hearts when hope seemed long gone. We have prayed with rejoicing when there were millimeters of progress. We have sobbed prayers of questions when health unraveled before our eyes. We prayed victoriously when we walked out of hospital doors.
The Celebrations
We have jumped up and down when Asher first sat unassisted! We have smiled with tears in our eyes while he interacted with his siblings through play and books! We have clapped and cheered when food touched his lips. We have done the happy dance and sang out loud when he took his first steps alone! We have breathed breaths of gratitude while we watch him sleep peacefully in his own bed. We have praised him when he said his first words and signed his first signs. We have laughed deep belly laughs when he copies something he sees and knows he’s being funny! We have given high tens and hugs when he climbed the stairs to the top just for fun! We have captured endless memories of success and development from behind the lens of a camera. We have cried tears of joy when he opened his first Christmas gift at home when he was healthy and well.
We have been on a journey like no other. We have all come so far. And as I look behind us, I know that never once did we walk this journey alone. Never once did God leave us on our own. He has been so incredibly faithful!
Matt Redman - NEVER ONCE:
Wednesday, September 4, 2013
Never Once
As Asher begins Preschool next week and turns 3 next month, I have been reflecting on his precious life.
Remembering each stage of the last 3 years reminded me how much we have been through.
The Loving
We have fiercely cared for and sheltered our third child in a way that now feels "normal". We have been careful to protect him from unwanted illness and risks. We have held him in our arms while he endures countless tests and procedures. We have responded to his slightest sighs and loudest screams with speed and efficiency to the point that we can anticipate almost all of his needs without words. We have held cold cloths to his head during fevers and held his hands while he struggled to walk. We have rushed to the hospital(s) during the darkness and cold of night as his heart raced or his chest was in-drawing as he gasped for air. We have watched as his various surgery scars have faded to light pink from dark red.
The Prayers
We have prayed in confusion when facts were so unclear. We have whispered prayers of fear during hours of open heart surgery. We have prayed prayers of thanksgiving when our son survived cardiac arrests. We have cried prayers of pain when the unknown of life was too much to bare. We have shouted prayers of frustration when home and wholeness didn't seem close enough. We have held prayers of hope deep in our hearts when hope seemed long gone. We have prayed with rejoicing when there were millimeters of progress. We have sobbed prayers of questions when health unraveled before our eyes. We prayed victoriously when we walked out of hospital doors.
The Celebrations
We have jumped up and down when Asher first sat unassisted! We have smiled with tears in our eyes while he interacted with his siblings through play and books! We have clapped and cheered when food touched his lips. We have done the happy dance and sang out loud when he took his first steps alone! We have breathed breaths of gratitude while we watch him sleep peacefully in his own bed. We have praised him when he said his first words and signed his first signs. We have laughed deep belly laughs when he copies something he sees and knows he's being funny! We have given high tens and hugs when he climbed the stairs to the top just for fun! We have captured endless memories of success and development from behind the lens of a camera. We have cried tears of joy when he opened his first Christmas gift at home when he was healthy and well.
We have been on a journey like no other. We have all come so far. And as I look behind us, I know that never once did we walk this journey alone. Never once did God leave us on our own. He has been so incredibly faithful!
Matt Redman - NEVER ONCE:
Remembering each stage of the last 3 years reminded me how much we have been through.
The Loving
We have fiercely cared for and sheltered our third child in a way that now feels "normal". We have been careful to protect him from unwanted illness and risks. We have held him in our arms while he endures countless tests and procedures. We have responded to his slightest sighs and loudest screams with speed and efficiency to the point that we can anticipate almost all of his needs without words. We have held cold cloths to his head during fevers and held his hands while he struggled to walk. We have rushed to the hospital(s) during the darkness and cold of night as his heart raced or his chest was in-drawing as he gasped for air. We have watched as his various surgery scars have faded to light pink from dark red.
The Prayers
We have prayed in confusion when facts were so unclear. We have whispered prayers of fear during hours of open heart surgery. We have prayed prayers of thanksgiving when our son survived cardiac arrests. We have cried prayers of pain when the unknown of life was too much to bare. We have shouted prayers of frustration when home and wholeness didn't seem close enough. We have held prayers of hope deep in our hearts when hope seemed long gone. We have prayed with rejoicing when there were millimeters of progress. We have sobbed prayers of questions when health unraveled before our eyes. We prayed victoriously when we walked out of hospital doors.
The Celebrations
We have jumped up and down when Asher first sat unassisted! We have smiled with tears in our eyes while he interacted with his siblings through play and books! We have clapped and cheered when food touched his lips. We have done the happy dance and sang out loud when he took his first steps alone! We have breathed breaths of gratitude while we watch him sleep peacefully in his own bed. We have praised him when he said his first words and signed his first signs. We have laughed deep belly laughs when he copies something he sees and knows he's being funny! We have given high tens and hugs when he climbed the stairs to the top just for fun! We have captured endless memories of success and development from behind the lens of a camera. We have cried tears of joy when he opened his first Christmas gift at home when he was healthy and well.
We have been on a journey like no other. We have all come so far. And as I look behind us, I know that never once did we walk this journey alone. Never once did God leave us on our own. He has been so incredibly faithful!
Matt Redman - NEVER ONCE:
Friday, May 31, 2013
Our Journey back to sleep
For the last 2.5 years, we have learned how to walk around doing our daily tasks while half asleep. Night time has been reserved for medicines, feedings, vomiting, ER visits, heart rate checks, crying, musical beds, laughing, movies, tv, pretty much anything and everything OTHER than SLEEP!
For months, all of this was tolerable. We were over joyed to have Asher home, whatever it was that we had to do or he wanted to do, we just did it!
Fast forward to the last few months. We have had a stable, happy, for the most part healthy, 2 year old! When sleep still wasn't happening, we decided, he must hate his crib and be ready for a bed. After a short stint on the the crib mattress on the floor, we bought bunk beds for Joel & Asher. Asher has an amazing double bed on the bottom bunk. He can get out of it easily and I'm sure if he tried, he could get back into it as well. We have pillows along the outside of it so he doesn't fall out of bed (which he actually has managed to do, but only 2 times in the last several months!).....he has his beloved Fisher Price Aquarium on the head board and a Discovery Kids light up bug on his bed that shines stars and the moon onto the wall and bed above him. Its cozy, calming and to be honest - a bed I would have LOVED when I was growing up!
After all of this "big boy" bed talk and getting him settled in, we realized the trouble with sleep wasn't the crib, it's not the bed...it wasn't even Asher, it was US! GASP! Sleep problems are often attributed to CHARGE syndrome so we just chalked it up to that...we (ok maybe more I than we) had not considered that we could be fueling the night time parties! Yes, when he has been sick, he has needed us throughout the night, just like any child would! But, in the end our lives were revolving around getting Asher to sleep.
Nap times I would spend at least an hour if not more lying beside him (at least it's a comfy bed I told myself) trying to get him to fall asleep. At bedtime, it was another hour or more lying beside him to get him to sleep! He also had a fairly demanding attitude where daddy had to do bed time and mommy had to do nap time, and heaven help us if that couldn't or didn't happen! During the middle of the night, he would wake up wanting a bottle, and I thought to get him to sleep faster, we should just give it to him...however, we realized those short wake ups were becoming hours of no sleep in the night!
Finally, after realizing that he could handle sleep training and this was more about us (me) than him, I conceded that we needed to help him learn to put himself to sleep without us and without a bottle! In my head I think I had actually known this but my heart did not want to admit my baby, my baby who I am with 24 hours a day, was growing up.
It's been a common theme for me, as a mom of a special needs boy who is also the youngest, to admit that I can and really should push Asher to learn to do things for himself. I didn't second guess pushing my older two when they were that age, to do age appropriate things, but with Asher, it's a constant internal battle.
Yes, he is the youngest and I want to keep him in my arms and not let him down. Yes, he had a very rough start in life and I want to keep him in my arms and not let him get hurt. But the truth of it all is, yes, he is a 2.5 yr old healthy boy who needs to hop out of his mother's arms and begin to explore, learn, and sigh, even make mistakes or have accidents. I am reluctantly coming to grips with this truth.
The very best for Asher as always meant protecting him from a laundry list of things. This is no longer the very best for him. If I want to continue to give him the best, I have to let him go in some areas. I have to let him toddle around and bump into things, I have to let him try new games and play with new toys. I have to put him in bed, have short cuddles and kisses and walk away. That is the new best!
I am ecstatic to share that after one week of sleep training (a very gradual process each night), Asher seems to be sleeping so much better! He hardly wakes in the night, and if he happens to, we go in, reassure him with a hug and kiss and tuck him in and go back to bed. He no longer cries at that! We no longer lay down beside him at bedtime, we cuddle, read, and kiss and walk away and Asher puts himself to sleep!
We had a long journey back to sleep. I fully expect that there will be set backs, interruptions and some challenging nights ahead, but I am confident that we can now handle it and then return to our routine.
I know that as we continue to give Asher the very best in life, that there will be more "letting go", but in the mean time, I am going to enjoy sleeping, at NIGHT!
GOODNIGHT!!!
For months, all of this was tolerable. We were over joyed to have Asher home, whatever it was that we had to do or he wanted to do, we just did it!
Fast forward to the last few months. We have had a stable, happy, for the most part healthy, 2 year old! When sleep still wasn't happening, we decided, he must hate his crib and be ready for a bed. After a short stint on the the crib mattress on the floor, we bought bunk beds for Joel & Asher. Asher has an amazing double bed on the bottom bunk. He can get out of it easily and I'm sure if he tried, he could get back into it as well. We have pillows along the outside of it so he doesn't fall out of bed (which he actually has managed to do, but only 2 times in the last several months!).....he has his beloved Fisher Price Aquarium on the head board and a Discovery Kids light up bug on his bed that shines stars and the moon onto the wall and bed above him. Its cozy, calming and to be honest - a bed I would have LOVED when I was growing up!
After all of this "big boy" bed talk and getting him settled in, we realized the trouble with sleep wasn't the crib, it's not the bed...it wasn't even Asher, it was US! GASP! Sleep problems are often attributed to CHARGE syndrome so we just chalked it up to that...we (ok maybe more I than we) had not considered that we could be fueling the night time parties! Yes, when he has been sick, he has needed us throughout the night, just like any child would! But, in the end our lives were revolving around getting Asher to sleep.
Nap times I would spend at least an hour if not more lying beside him (at least it's a comfy bed I told myself) trying to get him to fall asleep. At bedtime, it was another hour or more lying beside him to get him to sleep! He also had a fairly demanding attitude where daddy had to do bed time and mommy had to do nap time, and heaven help us if that couldn't or didn't happen! During the middle of the night, he would wake up wanting a bottle, and I thought to get him to sleep faster, we should just give it to him...however, we realized those short wake ups were becoming hours of no sleep in the night!
Finally, after realizing that he could handle sleep training and this was more about us (me) than him, I conceded that we needed to help him learn to put himself to sleep without us and without a bottle! In my head I think I had actually known this but my heart did not want to admit my baby, my baby who I am with 24 hours a day, was growing up.
It's been a common theme for me, as a mom of a special needs boy who is also the youngest, to admit that I can and really should push Asher to learn to do things for himself. I didn't second guess pushing my older two when they were that age, to do age appropriate things, but with Asher, it's a constant internal battle.
Yes, he is the youngest and I want to keep him in my arms and not let him down. Yes, he had a very rough start in life and I want to keep him in my arms and not let him get hurt. But the truth of it all is, yes, he is a 2.5 yr old healthy boy who needs to hop out of his mother's arms and begin to explore, learn, and sigh, even make mistakes or have accidents. I am reluctantly coming to grips with this truth.
The very best for Asher as always meant protecting him from a laundry list of things. This is no longer the very best for him. If I want to continue to give him the best, I have to let him go in some areas. I have to let him toddle around and bump into things, I have to let him try new games and play with new toys. I have to put him in bed, have short cuddles and kisses and walk away. That is the new best!
I am ecstatic to share that after one week of sleep training (a very gradual process each night), Asher seems to be sleeping so much better! He hardly wakes in the night, and if he happens to, we go in, reassure him with a hug and kiss and tuck him in and go back to bed. He no longer cries at that! We no longer lay down beside him at bedtime, we cuddle, read, and kiss and walk away and Asher puts himself to sleep!
We had a long journey back to sleep. I fully expect that there will be set backs, interruptions and some challenging nights ahead, but I am confident that we can now handle it and then return to our routine.
I know that as we continue to give Asher the very best in life, that there will be more "letting go", but in the mean time, I am going to enjoy sleeping, at NIGHT!
GOODNIGHT!!!
Sunday, January 20, 2013
Why All of the Sickness?
I know we have requested prayer because of illness countless
times. It probably seems like there is
always someone sick. I thought I would
type out a list of practical, in the natural reasons of why we are often
sick. By we, I mean Jesse, Asher & I
because until the end of Dec. when Joel & Calla caught mild colds, they had
been perfectly healthy for over 10 months!
I believe God is bigger than this list, and I believe He
wants us healthy, perhaps this list will give you clearer insight as to how to
pray specifically for us, and to help others understand a little bit what life
is like for us since Asher was born.
1)
Jesse and
I are sleep deprived. We hardly get a
full night of sleep. Asher wakes up
constantly for various reasons. One of
them is thought to be “just part of CHARGE syndrome”, no one knows for sure why
kids diagnosed with CHARGE have this trouble of sleeping! We (or at least one of us) for over 2 years
has waited up to give Asher his heart meds – 10pm at the earliest, often
11pm. There is never a “Let’s just put
the kids to bed and sleep” sort of night!
Healthy eating, exercise and supplements will never be a substitute for
sleep!
2)
We try not to let this consume our lives, we
trust Asher to God, however, always running in the back of our minds is the
stress that comes with the responsibility for caring for Asher’s every
need. We make critical, sometimes life
and death decisions for Asher often.
This type of stress does not help our bodies fight off illness.
3)
It is now believed that Asher may have another
gene sequence that causes lack of growth (on top of the growth problems faced
by kids with CHARGE) as well as a lack of a properly functioning immune
system. He is considered to be medically
fragile and immune compromised. He picks
up everything. His body and heart are
just not strong enough to fight everything off!
So, we limit our times out of the house, and stay away from people who
are sick (if we know ahead of time)…otherwise, we are always “taking our
chances” if we are out and about.
4)
We visit 3 different hospitals frequently for
various follow up appointments. That is
on top of the amount of times we are in and out of the doctors office. These aren’t places I would suggest to
frequent with a medically fragile child.
ESPECIALLY at the age he is at, wanting to touch, taste and explore his
surroundings! We do our VERY best to sanitize,
change our clothes, even wear masks sometimes but those germs are pesky! People think that I am overboard for not
touching various things (including magazines!) in hospitals and offices, but
honestly I am trying to keep us well!
5)
This one is just the good old fashioned – People
STILL leave their houses when they are sick!
They still don’t wash their hands well enough, and they are still out
there spreading their germs.
Bottom line is we are run down. We do our best but we are run down, it’s
really hard to stay healthy when your body is that run down. And it’s not just our house, there are
families all over with kids with special needs who feel the same pressures and
stresses. While you pray for us, you can
pray for them too!
Tuesday, November 27, 2012
Part of the journey....
It seems that no matter how many time I hear the cardiologist say "Asher's heart function looks great", I still take Asher to his Cardiology appointments with a lump in my throat and a pit in my stomach. I don't breath properly until he says at the end of the 3 hour appointment "Asher's heart function looks great!"....it's often a long 3 hours until that part!
Jesse and I took Asher over a week ago to his 6 month check up at the Cardiologist. 6 months is incredible considering there was a time, not so long ago, that we were in that office every 2 weeks if not more frequently! At the end of his appointment the cardiologist decided to do a 24 hr holter to see what his heart rate and rhythm were doing. We had reported noticing frequent runs of irregular beats and rates. The plan had been to let him out grow the current dose of antiarrhythmia med, but the Dr. decided that didn't seem like a good plan if he was having break through runs of A.E.T (Atrial Ectopic Tachecardia).
The Cardiologist called last night (of course at the exact second I was trying to get the kids out of the house to get Joel to his Playmakers dress rehersal!) and said he didn't like what the holter showed. He was having many runs of A.E.T. and he was confused as to why he was. He's on the maximum dose of his med, and it's been over 12 months since we discontinued the 2nd med to help conrol, so why now? I offered a hypothesis that it could be his asthma meds that were introduced right around the same time as these break through runs. He thought that seemed impossible according to all of the "literature" on the meds, but said to monitor closely now that we took him off of the asthma meds, even rate checks in the night.
Well, my hypothesis was wrong. Asher was up in the night with irregular rhythms. He hates to be alone during these runs and especially if it's at night. It was a long night! He woke up this morning still irregular.
I feel disappointed for a few reasons. First, I just said to myself after last week, we have no London appointments now until Spring!!! I celebrated that even! And now, we have to go back every couple of weeks for 24 Holters until they decide on how to manage these runs. Not a big deal, but still I'm disappointed that the "break" I was looking forward to, isn't so much of a break after all.
Second, it's a few days away from December. The month of December still comes with much tenderness in my heart. The pain of having to leave Asher in the hospital for his first Christmas is healing, but the wound is still sore to touch. Making changes in heart meds in December causes some discomfort for me. The thought of introducing a 2nd med or dose changes in December is disappointing. I'd rather have a December that isn't "touched" by things that can risk hospitalization.
Third, I know we've come so far, I was especially reminded of this last week when we celebrated being down to 1 med! Asher came home on 6+ meds! With the daily antibiotics discontinued last week, we were so excited to be down to 1! We now, may need to add the 2nd heart med back to his rate management. And yes, I want it to be under control, and yes it seems "minor" in the grand scheme of things, and yes we've done 6 meds/day, so what's 2 again? But it just adds to the feeling of a step backwards instead of forwards.
It's also really hard to be encouraged when you're exhausted and over tired! I do know that God is faithful, and absolutely I want the absolute best and will do anything he needs to keep him healthy and well and thriving! I just needed to "vent" a little on the disappointments so I can move on in peace knowing that God has a plan, and I can rest in it. This is just all part of the journey.
Jesse and I took Asher over a week ago to his 6 month check up at the Cardiologist. 6 months is incredible considering there was a time, not so long ago, that we were in that office every 2 weeks if not more frequently! At the end of his appointment the cardiologist decided to do a 24 hr holter to see what his heart rate and rhythm were doing. We had reported noticing frequent runs of irregular beats and rates. The plan had been to let him out grow the current dose of antiarrhythmia med, but the Dr. decided that didn't seem like a good plan if he was having break through runs of A.E.T (Atrial Ectopic Tachecardia).
The Cardiologist called last night (of course at the exact second I was trying to get the kids out of the house to get Joel to his Playmakers dress rehersal!) and said he didn't like what the holter showed. He was having many runs of A.E.T. and he was confused as to why he was. He's on the maximum dose of his med, and it's been over 12 months since we discontinued the 2nd med to help conrol, so why now? I offered a hypothesis that it could be his asthma meds that were introduced right around the same time as these break through runs. He thought that seemed impossible according to all of the "literature" on the meds, but said to monitor closely now that we took him off of the asthma meds, even rate checks in the night.
Well, my hypothesis was wrong. Asher was up in the night with irregular rhythms. He hates to be alone during these runs and especially if it's at night. It was a long night! He woke up this morning still irregular.
I feel disappointed for a few reasons. First, I just said to myself after last week, we have no London appointments now until Spring!!! I celebrated that even! And now, we have to go back every couple of weeks for 24 Holters until they decide on how to manage these runs. Not a big deal, but still I'm disappointed that the "break" I was looking forward to, isn't so much of a break after all.
Second, it's a few days away from December. The month of December still comes with much tenderness in my heart. The pain of having to leave Asher in the hospital for his first Christmas is healing, but the wound is still sore to touch. Making changes in heart meds in December causes some discomfort for me. The thought of introducing a 2nd med or dose changes in December is disappointing. I'd rather have a December that isn't "touched" by things that can risk hospitalization.
Third, I know we've come so far, I was especially reminded of this last week when we celebrated being down to 1 med! Asher came home on 6+ meds! With the daily antibiotics discontinued last week, we were so excited to be down to 1! We now, may need to add the 2nd heart med back to his rate management. And yes, I want it to be under control, and yes it seems "minor" in the grand scheme of things, and yes we've done 6 meds/day, so what's 2 again? But it just adds to the feeling of a step backwards instead of forwards.
It's also really hard to be encouraged when you're exhausted and over tired! I do know that God is faithful, and absolutely I want the absolute best and will do anything he needs to keep him healthy and well and thriving! I just needed to "vent" a little on the disappointments so I can move on in peace knowing that God has a plan, and I can rest in it. This is just all part of the journey.
Tuesday, October 16, 2012
A look at Asher's 2 year progress!
As all you parents know, doctor check ups almost always go along with a 2nd birthday!
Last week Asher say his paediatrician for a 2 year check up and she was so amazed by the progress and gains Asher has made!
His Progress has been so exciting to watch - this time last year he was still struggling to maintain neck control and could not sit unassisted! But now he is:
Cruising along furniture and walls
Walking with his toy walker
Crawling upstairs
Signing more than 20 signs consistently and appropriately and saying a few words like mom, dad, all done etc.
Gaining balance while standing
Pull up to standing and sitting up from lying down (both of these took a long time for him to master so the milestone seems HUGE!)
He is down to 2 medicines and hopefully one will be discontinued before Christmas! (He started at 6+ when he was 3 months old and home!)
Drinking Homo milk 3x a day with one bottle of formula or pediasure!
He weighs 22.44 lbs and is 68cm tall! And while that is still below the 5th% - he's ON the CHARTS! The doctor was so pleased, she knows how hard we fight for every ounce that he gains! (If only the same excitement could be shared when I gain an ounce!!) :)
Yesterday he had his speech and language assessment by our home visiting SLP and she said he is in the 18-21 month range and many "emerging skills" that are in the 24+ month range! He has caught up so well with his communication since his hearing aids have been in place! His last assessment in May showed that he was over 9 months "delayed" in communication....the gap is closing! :)
We are looking forward to a recreational therapist helping Asher out this winter! She will be assisting him in the pool! He has been terrified of swimming and pools so we are really hoping he will begin to like the water through this therapy!
We are so amazed every day with the gains and strides Asher is making - every milestone is such a victory for him!
Last week Asher say his paediatrician for a 2 year check up and she was so amazed by the progress and gains Asher has made!
His Progress has been so exciting to watch - this time last year he was still struggling to maintain neck control and could not sit unassisted! But now he is:
Cruising along furniture and walls
Walking with his toy walker
Crawling upstairs
Signing more than 20 signs consistently and appropriately and saying a few words like mom, dad, all done etc.
Gaining balance while standing
Pull up to standing and sitting up from lying down (both of these took a long time for him to master so the milestone seems HUGE!)
He is down to 2 medicines and hopefully one will be discontinued before Christmas! (He started at 6+ when he was 3 months old and home!)
Drinking Homo milk 3x a day with one bottle of formula or pediasure!
He weighs 22.44 lbs and is 68cm tall! And while that is still below the 5th% - he's ON the CHARTS! The doctor was so pleased, she knows how hard we fight for every ounce that he gains! (If only the same excitement could be shared when I gain an ounce!!) :)
Yesterday he had his speech and language assessment by our home visiting SLP and she said he is in the 18-21 month range and many "emerging skills" that are in the 24+ month range! He has caught up so well with his communication since his hearing aids have been in place! His last assessment in May showed that he was over 9 months "delayed" in communication....the gap is closing! :)
We are looking forward to a recreational therapist helping Asher out this winter! She will be assisting him in the pool! He has been terrified of swimming and pools so we are really hoping he will begin to like the water through this therapy!
We are so amazed every day with the gains and strides Asher is making - every milestone is such a victory for him!
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