So, we met with our O.T who does feeding therapy. We talked some about what was advised to us at the Pediatric G.I. appointment. She also fed Silas some baby food, watched his mouth movements and examined his mouth. Like me, she felt feeding therapy unnecessary at this point. He is making progress without it, and while he may not be where they would like him to be from a G.I. standpoint, he is in no danger and is sustained well on his current diet. She encouraged me not to feel rushed and to continue enjoying our nursing relationship. One thing she did advise was to skip the sippy cup. From a developmental standpoint, they aren't required and are there simply for convenience for mom, and assurance the carpet won't end up being every shade of juice sold at the grocer.
UpcomingAppointments:
- G.I. Follow-Up (May)
-Ped.12 Month Well-Check (August)
-Urologist Follow-Up (July)
-Neurologist 12 Month Check (July 27)
-Genetics workup (August)
-C.D.S.A. Progress EVAL
Tuesday, April 23, 2013
Thursday, April 18, 2013
A New Face and An Unacceptable Plan
Prefacing this post by saying I like Dr Williams and believe he has done well by my son. This is not about him or his office.
Worst G.I. visit ever yesterday. I somehow ended up seeing his N.P. who came up with a whole new plan for my son, my son who is growing great. One good thing came of yesterday, someone finally listened to my issue with his reflux meds and we are having one compounded for us. I hope this will make a difference.
There were some not so nice plan changes too. They suggested Silas go to feeding therapy, breastfeed less, eat more, and sleep through the night. They want him on vitamins (okay, but who is going to remember all this?) And stooling every 3 days (primarily breastfed babies can go 7 days on average and longer for some because there is no by-product or waste from breastmilk) which requires yet another medicine.
So now we are getting complicated. He has breathing treatments 2 x per day, reflux meds, and now they are adding vitamins and stool aid. I do have 3 kids, a schedule to keep up with, and a life to live. If he honestly needed all these things, I would find a way but anyone who knows and sees my baby on a consistent basis can tell you he is happy, doing well, and growing great.
Perhaps the most aggravating and infuriating moment of the day came when my baby was paraded through the office in just his diaper, "this is what a well-fed breastfed baby looks like." Okay, my baby is beautiful and healthy. He has rolls, so smushy and we love him, all of him. But please don't show him around to all your colleagues and then tell me he is overweight for weight-to-length and that I need to decrease his milk intake. He is growing well, we are a short family. He will thin out as he becomes more mobile. He IS a GREAT example of a baby thriving who has every reason not to, and a story of a MOTHERS determination and heart to give her baby the very best. IF you knew our story, you would understand the miracle of my son and truly feel the pride and joy and thankfulness I feel when I look at his breastmilk-made rolls of love. He is succeeding at something everyone told us to give up! We are OVERCOMERS!
Worst G.I. visit ever yesterday. I somehow ended up seeing his N.P. who came up with a whole new plan for my son, my son who is growing great. One good thing came of yesterday, someone finally listened to my issue with his reflux meds and we are having one compounded for us. I hope this will make a difference.
There were some not so nice plan changes too. They suggested Silas go to feeding therapy, breastfeed less, eat more, and sleep through the night. They want him on vitamins (okay, but who is going to remember all this?) And stooling every 3 days (primarily breastfed babies can go 7 days on average and longer for some because there is no by-product or waste from breastmilk) which requires yet another medicine.
So now we are getting complicated. He has breathing treatments 2 x per day, reflux meds, and now they are adding vitamins and stool aid. I do have 3 kids, a schedule to keep up with, and a life to live. If he honestly needed all these things, I would find a way but anyone who knows and sees my baby on a consistent basis can tell you he is happy, doing well, and growing great.
Perhaps the most aggravating and infuriating moment of the day came when my baby was paraded through the office in just his diaper, "this is what a well-fed breastfed baby looks like." Okay, my baby is beautiful and healthy. He has rolls, so smushy and we love him, all of him. But please don't show him around to all your colleagues and then tell me he is overweight for weight-to-length and that I need to decrease his milk intake. He is growing well, we are a short family. He will thin out as he becomes more mobile. He IS a GREAT example of a baby thriving who has every reason not to, and a story of a MOTHERS determination and heart to give her baby the very best. IF you knew our story, you would understand the miracle of my son and truly feel the pride and joy and thankfulness I feel when I look at his breastmilk-made rolls of love. He is succeeding at something everyone told us to give up! We are OVERCOMERS!
Friday, April 12, 2013
Dont Give Up On Us
I am quickly learning that raising a child who is medically involved means dealing with rejection of a new sort. I was prepared that some people may choose not to be involved in our lives or that some kids (and even adults) may stare (or worse). i was notprepared that his medical team might throw up their hands and say, "We may never know." I was even less prepared to be told "We have done all we can. We will see you for his Well-Child in July, unless he is sick between now and then. You should contact his Neurologist for any follow-up concerning the breathing pauses." They had nothing to say about when to discontinue the breathing treatments or the apnea monitor.I left feeling utterly alone in this fight for my son. His Pediatrician is supposed to be the first line of defense, and they have basically washed their hands of us. Well, I won't be tossed out on my keister that easy.
Wednesday, April 10, 2013
Back to Life
Wow, we had a crazy day. Silas had no fever or breathing spells overnight and was great on his big sister tater's field trip today. He enjoyed getting a new carseat and snagging dinner on the beach. All in all, a great first day home. He still has quite a few ouchies from all the sticking they did at the hospital. Proud of my tough guy! Glad to be home.
Tuesday, April 9, 2013
Heading Home
So, we must say goodbye to our room today. We are going home. Silas will surely miss his PICU friends, his safari mobile, and all the extra cuddles and hugs from everyone. But, this is a good thing. While we don't have the concrete answers we had so hoped for, we are confident that this too is a process. Numerous tests have been sent off, follow-up appointments have been made, monitors and training sessions have been given and scheduled. It is a work in progress, like so much of life, when you have a medically involved cchild.
I would like to extend a public and heartfelt welcome to all of the people who have come together to offer support, encouragement, love, and meet tangible needs.
To Ultimate Faith church and our family there- we are honored by your big hearts and grateful for your love. We can't wait to be back in God's House and worship with you.
To Cynthia, Ma D, Bri & Daniel, and all of our visitors who cheered us up and prayed over our son, THANK YOU. You made this a little easier.
To those who have helped take care of my beautiful girls, grandma and grandpa, Amanda and Emma, I couldnt be here fighting for answers if I had any doubt that my girls were okay. You put my mind at ease and you make a difficult road a little less treacherous. My girls love you all. Just ask them!
To our many Doctors, Nurses, housekeeping staff, cooks, and therapists at the hospital, we are blessed beyond measure through your service. Thank you for making us feel like family, for treating us as if you had nowhere else to be, and for putting up with our many questions.
For all the prayer warriors that number in the hundreds, for all the facebook messages that were sent privately, for all the phone calls that were made, we are so grateful and appreciative. There is so great a love. It was all these things that reminded me to keep the faith, that bolstered me when I was in tears. Thank you.
And GOD bless you each abundantly. May we be so able to serve you in your time of need!
Sarah
I would like to extend a public and heartfelt welcome to all of the people who have come together to offer support, encouragement, love, and meet tangible needs.
To Ultimate Faith church and our family there- we are honored by your big hearts and grateful for your love. We can't wait to be back in God's House and worship with you.
To Cynthia, Ma D, Bri & Daniel, and all of our visitors who cheered us up and prayed over our son, THANK YOU. You made this a little easier.
To those who have helped take care of my beautiful girls, grandma and grandpa, Amanda and Emma, I couldnt be here fighting for answers if I had any doubt that my girls were okay. You put my mind at ease and you make a difficult road a little less treacherous. My girls love you all. Just ask them!
To our many Doctors, Nurses, housekeeping staff, cooks, and therapists at the hospital, we are blessed beyond measure through your service. Thank you for making us feel like family, for treating us as if you had nowhere else to be, and for putting up with our many questions.
For all the prayer warriors that number in the hundreds, for all the facebook messages that were sent privately, for all the phone calls that were made, we are so grateful and appreciative. There is so great a love. It was all these things that reminded me to keep the faith, that bolstered me when I was in tears. Thank you.
And GOD bless you each abundantly. May we be so able to serve you in your time of need!
Sarah
You Cant Compare, My Love
One of the most difficult things of being the parent of a child developing a little slower than typical is that everywhere you go, some happy parent, proud grandma, or well-meaning friend wants to talk about milestones. And if that were not enough, as a mother you are surrounded by other mothers with other babies. I see friends' children eating textured food, crawling, pulling up on things, clapping their hands, reaching for mommy and daddy, saying mama and dada and it sometimes makes my heart ache. I know children grow and develop on their own. And I know that Silas is a little behind the rest because of his slower brain development. But I also know as a mother how beautiful those milestones are, and how my heart longs to share them with my friends rather than just nod and smile and say "soon.." I'm in no hurry to make my boy grow up, because I cherish every precious giggle, smile, coo, and snuggle. This phase passes so fast and you don't get it back.
Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)
Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)
Monday, April 8, 2013
Why Concrete Answers Matter
When your child has a breathing episode, the last thing you think of is what you need to take to the hospital. The first and most consuming thought is making it there in time. Once you are there, the goal is single-purposed: find out why it happened and how to prevent or treat it.
The Doc was just in. Silas' EEG confirms NO seizure activity, even during the breating spells. His blood and urine culture are clean after 24 hours. Waiting to hear on the spinal fluid culture yet. So far, we have NO IDEA what set off the fever or the cyanosis and apneic breathing spells. He hasn't had any since yesterday afternoon. There was mention of 'the earliest we could send you home might be tomorrow.'
I am THRILLED Silas is doing better, but I DONT want to leave here without knowing what to expect, without answers as to whether this will happen again.
While driving to the hospital, I had both eyes on the road and both ears on the sound of my son's breathing. When we got stopped at a railroad crossing, I had 911 on the phone explaining the situation. I was seconds away from an ambulance ride when the crossing opened and cars started moving. The whole way there I kept talking to silas, willing him 'BREATHE!' and counting the seconds between breaths. When we pulled upto the ER I literally RAN in with my son and said to the nurse "my son is having breathing difficulty." Only once he was in a room and being taken care of did i stop to breathe and think about what had happened.
So, YES concrete answers matter, especially in a situation like this. Please keep praying that God give the Doctor and Nurse taking care of Silas pieces to the puzzle, wisdom in their investigation, and even if needed more episodes in our current controlled environment to analyze in order to figure out the cause.
I come against any confusion, hiddenness, and attempts of the enemy to keep us in disarray and speak conclusive, revealed medical proof of what is and had occurred. We stand on faith that this will be brought to LIGHT so that it can be dealt with AT THE ROOT CAUSE. In jesus name, amen.
The Doc was just in. Silas' EEG confirms NO seizure activity, even during the breating spells. His blood and urine culture are clean after 24 hours. Waiting to hear on the spinal fluid culture yet. So far, we have NO IDEA what set off the fever or the cyanosis and apneic breathing spells. He hasn't had any since yesterday afternoon. There was mention of 'the earliest we could send you home might be tomorrow.'
I am THRILLED Silas is doing better, but I DONT want to leave here without knowing what to expect, without answers as to whether this will happen again.
While driving to the hospital, I had both eyes on the road and both ears on the sound of my son's breathing. When we got stopped at a railroad crossing, I had 911 on the phone explaining the situation. I was seconds away from an ambulance ride when the crossing opened and cars started moving. The whole way there I kept talking to silas, willing him 'BREATHE!' and counting the seconds between breaths. When we pulled upto the ER I literally RAN in with my son and said to the nurse "my son is having breathing difficulty." Only once he was in a room and being taken care of did i stop to breathe and think about what had happened.
So, YES concrete answers matter, especially in a situation like this. Please keep praying that God give the Doctor and Nurse taking care of Silas pieces to the puzzle, wisdom in their investigation, and even if needed more episodes in our current controlled environment to analyze in order to figure out the cause.
I come against any confusion, hiddenness, and attempts of the enemy to keep us in disarray and speak conclusive, revealed medical proof of what is and had occurred. We stand on faith that this will be brought to LIGHT so that it can be dealt with AT THE ROOT CAUSE. In jesus name, amen.
Sunday, April 7, 2013
Puzzle Mania: update 4/7/13
so, theres not a ton new, but here is what we know today.
1) His white blood count is down from 28000 to 11500 (cut in half, God be glorified)
2) His c-reactive proteins are high. Normal is less than 1. His was 5. This indicates there is infection/inflamation somewhere in his body.
3) His fever is under control. Yay, prayer answered!
4) cultures might come back tomorrow... might!
5) His EEG comes off tonight.
Another thing we are studying is whether his apnea is part of the infectionor alongside it. We removed oxygen today, to get a better picture of what these apnea spells look like.
Still praying for conclusive answers. Still here. And so blessed. Thank you to all our visitors, family who have called, friends and family who have watched out for my girls and husband in my absence, and those who have brought goodies for me. We covet your prayers mostly and stand on FIRM FAITH that we WILL have concrete answers and healing for our beautiful boy!
1) His white blood count is down from 28000 to 11500 (cut in half, God be glorified)
2) His c-reactive proteins are high. Normal is less than 1. His was 5. This indicates there is infection/inflamation somewhere in his body.
3) His fever is under control. Yay, prayer answered!
4) cultures might come back tomorrow... might!
5) His EEG comes off tonight.
Another thing we are studying is whether his apnea is part of the infectionor alongside it. We removed oxygen today, to get a better picture of what these apnea spells look like.
Still praying for conclusive answers. Still here. And so blessed. Thank you to all our visitors, family who have called, friends and family who have watched out for my girls and husband in my absence, and those who have brought goodies for me. We covet your prayers mostly and stand on FIRM FAITH that we WILL have concrete answers and healing for our beautiful boy!
Too Many Needles, Not Enough Hay
Its wee hours of the morning, and I can't sleep. For those who are not aware, Silas is in the PICU. He was admitted 346 Saturday morning with a 102.2 Temperature and respiratory distress, code blue.
The fever pointed to infection so once we had a room on the Pediatric floor we began collecting blood work, urine for analysis, and a lumbar puncture to check for meningitis. They did a chest xray in triage to check for pneumonia reoccurrence and it was clear. The lab work has not come back yet, except he was negative for influenza and RSV.
We were moved to PICU around 7 Saturday evening following a possible seizure and some slowed respirations. When moved over, the PICU nurse was able to listen with a stethoscope during an episode and discovered apnea. It was quite scary to hear "he is not breathing right now. He is apneic." So we are trying to find the cause of this as well, and whether it relates to his illness.
Silas is on several monitors, has an IV, and is currently being video recorded. He is very cranky at times, as you can imagine after all he has been through, but he still is a sweetheart, albeit a pitiful looking one at the moment.
For anyone who would like to call or visit, vising hours at the PICU are 9am-9pm. You must check in at the desk in the main lobby to get a pass. Please call or message Sarah to make certain we are not out at testing or otherwise isnt feeling available to visitors.
We covet your prayers at this time and thank you immensely for them. God speed.
The fever pointed to infection so once we had a room on the Pediatric floor we began collecting blood work, urine for analysis, and a lumbar puncture to check for meningitis. They did a chest xray in triage to check for pneumonia reoccurrence and it was clear. The lab work has not come back yet, except he was negative for influenza and RSV.
We were moved to PICU around 7 Saturday evening following a possible seizure and some slowed respirations. When moved over, the PICU nurse was able to listen with a stethoscope during an episode and discovered apnea. It was quite scary to hear "he is not breathing right now. He is apneic." So we are trying to find the cause of this as well, and whether it relates to his illness.
Silas is on several monitors, has an IV, and is currently being video recorded. He is very cranky at times, as you can imagine after all he has been through, but he still is a sweetheart, albeit a pitiful looking one at the moment.
For anyone who would like to call or visit, vising hours at the PICU are 9am-9pm. You must check in at the desk in the main lobby to get a pass. Please call or message Sarah to make certain we are not out at testing or otherwise isnt feeling available to visitors.
We covet your prayers at this time and thank you immensely for them. God speed.
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