Wednesday, March 12, 2008
GI Follow Up
Conway had a follow-up appt. with Dr. Brady yesterday and his weight is right on the curve where it should be. She's happy about that! I shared with her the screening results and she was also thrilled. I asked about "The Feeding Team" at Cardinal Glennon which is composed of a psychologist, dietician and OT and she said that for his age, she recommends we see a speech path at Children's that she's worked with in the past. So, we're waiting to hear back on what that might entail. The best news (for me anyway) was that we are going to start slowly introducing him to Peptamin Jr. formula and weaning off the breastmilk. That means there is an end in sight to the pumping! We'll start with his overnight feeding making it 1/4 Peptamin and 3/4 breastmilk and if he tolerates it, go with 1/2 and 1/2 for a while and keep bumping up the peptamin and decreasing the breastmilk. Our OT said that we also might see him "hungrier" or more willing to eat foods once he is all the way on Peptamin because Dr. Brady has orders for him to get 32 oz. per day (it is higher calories than breastmilk so he'll get less volume) whereas now he's getting around 37 oz/day. I also asked about weaning off the prevacid and reglan and she said that once he is eating food and we can pull the tube we will wean him off the meds. So, no time soon! He had OT today and since he did better than expected, we've upped his "homework" assignments. He now has to take 6 ML of babyfood 3X/day and continue offering the milk in a cup or peptamin JR in a cup. Sorry for all the details, just wanted to give you an idea of what he's doing these days! We go back to see her in mid-June.
Saturday, March 8, 2008
Developmental Screening Results
Connie was screened today by the Parents as Teachers parent educator. It was a 2nd Edition "Ages and Stages Questionnaire"--12 month/1 year ASQ Information Summary. He got 10 pts for each YES, 5 for Sometimes, and 0 for NO. There were 6 questions/skills in each section. The sections were Communication, Gross Motor, Fine Motor, Problem Solving and Personal-social.
Communication:
1) Play a nursery game such as so big, clap, etc--YES
2) Follow a simple command without gesture (he did "give it to me")--YES
3)Say a word other than Mama or Dada--NO
4)Look at objects when you say "where is the . . ."--YES
5)Shake head when he means no or yes--YES
Gross Motor:
1)Bend down to pick up a toy and stand back up--NO (he does this with help though)
2)Lower himself while holding on without flopping down or falling--YES
3)Walk along furniture holding on with only one hand--NO
4)If you hold his hands will he take several steps without tripping or falling?--NO
5)Take several steps forward holding on with only one hand?--NO
6)Stand in the middle of floor by self and take several steps forward?--NO
Fine Motor:
1)Pick up a string with first finger and thumb?--YES
2)Pick up a cheerio or crumb with tips of thumb and finger?--YES
3)Put a small toy down without dropping it and then take hand off toy?--YES
4)Use pincer grasp without resting his arm or hand on the table?--YES
5)Throw a ball with overhand motion--NO (he does roll the ball back)
6)Help turn pages of a book?--YES
Problem Solving:
1)Clap two toys together?--YES
2)Poke or try to get something that is inside a clear bottle--YES
3)Find a toy that you've hidden completely)--YES
4)Copy you after you put a toy in a bowl or box?--YES
5)Drop small toys, one after the other, into a container?--YES
6)Scribble on paper--SOMETIMES (he went back and forth but was holding it wrong so it didn't make marks)
Personal-Social:
1)Offer toy to you when you ask?-YES
2)Push arms through sleeves once arm is started in hole?-YES
3)Let go of a toy when giving it to you?-YES
4)Lift foot for shoe, sock or pant leg?--NO (he never wears shoes!)
5)roll a ball back to you?-YES
6)Hug a stuffed animal or doll?--YES
Overall Scores:
Communication: 50/60, norm is 15.8 to 60
Gross Motor: 10/60, norm is 18-60
Fine Motor: 50/60, norm is 28.4-60
Problem Solving: 55/60, norm is 25.2-60
Personal Social: 50/60, norm is 20.1-60
AND this was on the one year old (12 month) level. I'm just ecstatic that he didn't have to be scored on a younger form--like the 8 month old or 10 month old forms, let alone do this well on this form!
After the seizure and all the questions we had about him neurologically after such a long time on bypass, this is VERY reassuring to me!
2 other cute things he did recently include trying to comb his hair with his comb (on command even) and taking turns playing with two objects with Ms. Deb during PT on Friday. He would bang them together and then hand them to her and then she'd do the same and hand them back. This went on several times back and forth and was very cute. His receptive language is definitely right on! Yay Connie!
Communication:
1) Play a nursery game such as so big, clap, etc--YES
2) Follow a simple command without gesture (he did "give it to me")--YES
3)Say a word other than Mama or Dada--NO
4)Look at objects when you say "where is the . . ."--YES
5)Shake head when he means no or yes--YES
Gross Motor:
1)Bend down to pick up a toy and stand back up--NO (he does this with help though)
2)Lower himself while holding on without flopping down or falling--YES
3)Walk along furniture holding on with only one hand--NO
4)If you hold his hands will he take several steps without tripping or falling?--NO
5)Take several steps forward holding on with only one hand?--NO
6)Stand in the middle of floor by self and take several steps forward?--NO
Fine Motor:
1)Pick up a string with first finger and thumb?--YES
2)Pick up a cheerio or crumb with tips of thumb and finger?--YES
3)Put a small toy down without dropping it and then take hand off toy?--YES
4)Use pincer grasp without resting his arm or hand on the table?--YES
5)Throw a ball with overhand motion--NO (he does roll the ball back)
6)Help turn pages of a book?--YES
Problem Solving:
1)Clap two toys together?--YES
2)Poke or try to get something that is inside a clear bottle--YES
3)Find a toy that you've hidden completely)--YES
4)Copy you after you put a toy in a bowl or box?--YES
5)Drop small toys, one after the other, into a container?--YES
6)Scribble on paper--SOMETIMES (he went back and forth but was holding it wrong so it didn't make marks)
Personal-Social:
1)Offer toy to you when you ask?-YES
2)Push arms through sleeves once arm is started in hole?-YES
3)Let go of a toy when giving it to you?-YES
4)Lift foot for shoe, sock or pant leg?--NO (he never wears shoes!)
5)roll a ball back to you?-YES
6)Hug a stuffed animal or doll?--YES
Overall Scores:
Communication: 50/60, norm is 15.8 to 60
Gross Motor: 10/60, norm is 18-60
Fine Motor: 50/60, norm is 28.4-60
Problem Solving: 55/60, norm is 25.2-60
Personal Social: 50/60, norm is 20.1-60
AND this was on the one year old (12 month) level. I'm just ecstatic that he didn't have to be scored on a younger form--like the 8 month old or 10 month old forms, let alone do this well on this form!
After the seizure and all the questions we had about him neurologically after such a long time on bypass, this is VERY reassuring to me!
2 other cute things he did recently include trying to comb his hair with his comb (on command even) and taking turns playing with two objects with Ms. Deb during PT on Friday. He would bang them together and then hand them to her and then she'd do the same and hand them back. This went on several times back and forth and was very cute. His receptive language is definitely right on! Yay Connie!
Tuesday, March 4, 2008
One Year Check-Up
Conway went to Dr. Davis this morning for his 12 month check up and shots. He got four shots and was very unhappy about that. He made it through and settled down and then as soon as I laid him back down to dress him so we could leave and go to the dentist, he must have thought I was laying him back down and he was getting more shots because he started crying hysterically which makes him cough and gag and of course, vomit the entire feeding he had just finished! The tube came up and all. He was a mess. The nurse helped me clean the exam table so I could clean him up and dress him. It was awful! Dr. Davis is happy with his growth and developmental progress. He is in the 50th %ile for weight and head size and the 75th %ile for height. He'll go back somewhere between 15-18 months unless he gets sick before then.
Then it was on to the dentist. The snow had started by this time and getting both kids to the car, buckled in and stroller put away was a chore. I guess I'm out of practice since we really haven't gone anywhere all together since last summer! We made it to the dentist and were watching the local news in the waiting room and seeing how there were inches of snow in most parts of the city and county, but right around us the roads were great. This lasted until we got home and then it started a lot more. Thank God that the roads were clear and we made it everywhere safely. The dentist agreed that it was good to get him in to have a look since he has all that reflux and we talked about down the road possibly putting a protective layer (crowns) over his teeth to protect them from all the acid. He counted his teeth and took a look. Mookie had a turn too and did great. She let the doctor have a look-see and count her teeth. He said she is delayed in getting her back ones in(duh, she didn't get her first tooth until almost a year old!) but they are in good shape. She goes back in two weeks for a cleaning.
Thanks for looking in!
Then it was on to the dentist. The snow had started by this time and getting both kids to the car, buckled in and stroller put away was a chore. I guess I'm out of practice since we really haven't gone anywhere all together since last summer! We made it to the dentist and were watching the local news in the waiting room and seeing how there were inches of snow in most parts of the city and county, but right around us the roads were great. This lasted until we got home and then it started a lot more. Thank God that the roads were clear and we made it everywhere safely. The dentist agreed that it was good to get him in to have a look since he has all that reflux and we talked about down the road possibly putting a protective layer (crowns) over his teeth to protect them from all the acid. He counted his teeth and took a look. Mookie had a turn too and did great. She let the doctor have a look-see and count her teeth. He said she is delayed in getting her back ones in(duh, she didn't get her first tooth until almost a year old!) but they are in good shape. She goes back in two weeks for a cleaning.
Thanks for looking in!
Sunday, March 2, 2008
Conway is ONE!
Connie is officially one on March 3rd, but we celebrated his birthday on the 2nd. It was a beautiful day weather-wise and all around. Friends and family came from near and far to celebrate this miracle child. He was awake from 10:45am until around 5:30 pm. We tried to let him nap but I guess he was too excited for his big day. He was such a trooper. He let everyone hold him and he was a love bug all day. He sat on the floor and played while I opened the presents and didn't throw up one time on his birthday clothes! Finally after everyone was gone, he slept for about an hour and a half and then went to bed for the night at about 8:30.
I'm falling asleep as I post this, but I knew everyone would be anxious to see his birthday pics.
Here's a movie I made outlining his first year of life. What a year it has been!
Saturday, February 23, 2008
Heart Walk 2008--Get Involved!
The 2008 Heart Walk is coming up on May 3rd. Mark your calendars now and plan to join us at Frontier Park in St. Charles as a part of Team Care4Conway. We are so excited to be able to have this opportunity to be a part of something tangible to help raise awareness and funds for heart defects research.
Click here for info on the walk and you can register to walk right there. Be sure to put that you are registering to join the team "Care4Conway" (no spaces). If you can't walk, you can make an online donation. You would go to "General Team Donation" just to donate or "Team Page" to join and walk.
If you have any questions, please email Erin at ekbeckemeier@yahoo.com! Our goal is 20 participants, but I'm sure we can get a lot more than that. Depending on how many we have, we may get special Care4Conway t-shirts printed up to wear that day.
Click here for info on the walk and you can register to walk right there. Be sure to put that you are registering to join the team "Care4Conway" (no spaces). If you can't walk, you can make an online donation. You would go to "General Team Donation" just to donate or "Team Page" to join and walk.
If you have any questions, please email Erin at ekbeckemeier@yahoo.com! Our goal is 20 participants, but I'm sure we can get a lot more than that. Depending on how many we have, we may get special Care4Conway t-shirts printed up to wear that day.
Thursday, February 21, 2008
Wednesday, February 20, 2008
Steady as a Rock
Conway got weighed this morning and is up another three ounces! Yay! I was starting to stress out a little since he was hovering at that 22 lb mark for so long and debating with myself over whether or not to fortify the daytime feeds to increase his calories or keep his daytime feeds at 180 ml but increase his night time feed back up another 40 or 80 ml. My stress was relieved today when the nurse told me that she calls and leaves a message every week for the GI doctor telling her the weight and if she was wanting us to adjust his feeds/increase his calories, she'd call us or have us come in for an appt. to discuss. I just feel like the pressure is off me now and I can let the doctors decide!
He needs to get to sleep for his afternoon nap (so he's rested for his PT this afternoon) but he is in there just talking away. I think he's experimenting with language a bit and likes to hear himself so I'm not upset in the least. It is actually reassuring that he is doing this. The other day Greg was changing his diaper (yes, he does occasionally do this:) and Connie was rolling all over and hard to wrangle and get the new diaper on. Greg looked at me as if to say, "I wish he would sit still" but I quickly reminded him that we ought to be incredibly thankful that he's finally moving a bit more and wants to get around and explore.
We think he's getting closer to crawling. When positioned, he'll stay on all fours and hold his head up for a few seconds. He's just not the type of kid that is highly motivated to move. He'll reach a time or two for an object that is a ways away from him and if he doesn't get it, he doesn't fret. I guess what I'm trying to say is he gives up easily! Oh well. I guess we just haven't found the right toy to motivate him with yet!
He needs to get to sleep for his afternoon nap (so he's rested for his PT this afternoon) but he is in there just talking away. I think he's experimenting with language a bit and likes to hear himself so I'm not upset in the least. It is actually reassuring that he is doing this. The other day Greg was changing his diaper (yes, he does occasionally do this:) and Connie was rolling all over and hard to wrangle and get the new diaper on. Greg looked at me as if to say, "I wish he would sit still" but I quickly reminded him that we ought to be incredibly thankful that he's finally moving a bit more and wants to get around and explore.
We think he's getting closer to crawling. When positioned, he'll stay on all fours and hold his head up for a few seconds. He's just not the type of kid that is highly motivated to move. He'll reach a time or two for an object that is a ways away from him and if he doesn't get it, he doesn't fret. I guess what I'm trying to say is he gives up easily! Oh well. I guess we just haven't found the right toy to motivate him with yet!
Monday, February 18, 2008
New Toothbrush
Connie got his first "toothbrush" today. It's a little rubber brush that fits onto the end of my finger and it came with some fluoride-free toothpaste. I hesitated to get it because I was pretty skeptical about his willingness to allow me to brush his teeth. Most normal kids aren't too keen about getting their teeth brushed at this age, let alone a kid with the oral aversion issues he's faced. To my surprise, he loved it! The first taste of the toothpaste caught him off guard, you could tell, but he quickly began to enjoy the ticklish feeling he got from me rubbing his teeth and gums. This kid surprises me every day.
He's advancing toward the goal of all feeds being during the day. He now gets 180 mL (six ounces) four times per day and his overnight feeding is 370 mL. We are fortifying the overnight feed to 24 calories/ounce using Pregestimil (a predigested formula added to the breastmilk). His weight has been steadily hovering around the 22 pound mark so we'll see if adding the fortifier to the daytime feeds is on the horizon when the dietician comes this Friday.
Thursday, February 14, 2008
Happy, Happy, Happy!
Happy Valentine's Day, Happy Heart Day, Happy CHD Day and Happy Birthday, Grandma George!
Connie got his first haircut yesterday (thanks Cousin Laurie!). Now he looks like a little boy and not a baby anymore :(
Yesterday I delivered the valentine's that Celeste's class made to the Cardiac Intensive Care Unit at Children's Hospital. Originally I was supposed to hand deliver them to each patient but as I was entering the unit, a patient was coding, getting put on ECMO (bypass)and the whole staff was in "emergency mode" and they closed the unit to all visitors. I was disappointed about not getting to see the reactions of the kids as they got their valentines, but even more so, it was very sad to see the reality of this disease. That could be Conway someday. It was someone else's child today. Thank God for the miracles who are beating CHD's. There are many who are not winning or who have lost the battle.
Here are a couple of recent pics. . .
Monday, February 11, 2008
More CHD Awareness
In honor of CHD Awareness Week, I feel it is my duty to try to nudge people to do whatever they can to raise awareness of CHD's. Who better to make something "big" in the media than OPRAH! If you feel so inclined, click this link and then request that she do a show about Congenital Heart Defects. Maybe if we flood her producers with requests, she'll consider it. If a celebrity or two got on board, funding would increase and lives would be saved.
Thursday, February 7, 2008
CHD Awareness Kickoff Week!
Today is the start of CHD Awareness Week. I am reading a book to Celeste's first grade class and we are making valentine/get well cards to take to the patients recovering from heart surgery at Cardinal Glennon and Children's. The grade is also collecting toys, books and other items to give to the kiddos.
Please tell someone you meet today Connie's story.
I read a poem last night on John's carepage that was written for him but rings true for most CHD families.
You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"
I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.
---Stephanie Hustead
Connie had his appointment yesterday with the nurse practitioner at Dr. Brady's office. They upped his overnight calories to 24 cal due to a small percentage of weight gain in the past two weeks. We go back in a month. They are still happy with how he doesn't mind the tube in his nose and with the amount of vomiting we're seeing. Yesterday was kind of weird because he kept throwing up after feedings but he never threw up any milk, just phlegm. The phlegm was bright yellow, too. We couldn't figure out why it would be that color. If he has that again today I'll call the doctor to see what she says.
Please tell someone you meet today Connie's story.
I read a poem last night on John's carepage that was written for him but rings true for most CHD families.
You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"
I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.
---Stephanie Hustead
Connie had his appointment yesterday with the nurse practitioner at Dr. Brady's office. They upped his overnight calories to 24 cal due to a small percentage of weight gain in the past two weeks. We go back in a month. They are still happy with how he doesn't mind the tube in his nose and with the amount of vomiting we're seeing. Yesterday was kind of weird because he kept throwing up after feedings but he never threw up any milk, just phlegm. The phlegm was bright yellow, too. We couldn't figure out why it would be that color. If he has that again today I'll call the doctor to see what she says.
Tuesday, February 5, 2008
Update on Big Sis
Connie's big sister, 3 year-old, Mary Kathleen, had a follow-up today with the dermatologist to check her "birthmark" and decide whether or not a biopsy would be done. Since there has been no change in the last two months, Dr. Sanchez feels comfortable waiting and checking it again in a year. Of course, we'll go in sooner if something changes. She feels like it is a very unusual birthmark, kind of like a mole on a mole. She thinks that the sebacious (oil) glands that are normally under the skin are for some reason on top of the mole. If left alone, we'll probably see some changes in it when she enters puberty. She said right now she doesn't feel a biopsy is medically necessary based on what characteristics she sees and that it would be traumatic. At an older age, when the procedure can be explained to her, we may do it then just to find out what it is since it is so unusual. Thank you for your prayers!
Connie was weighed again today and is up another 1.5 oz. He's 22 pounds even now--such a big boy! Tomorrow he goes to Dr. Brady (GI doc) for a follow-up. I'll update again after the appointment.
Please say some prayers for another heart family we know, the James'. Their daughter, Bailey, who I've mentioned before, is getting ready for her big Double Switch surgery like Connie had. It is set for next week. She has had several operations already to get her heart ready for the big one. They are hopeful for her to finally get her big repair and nervous at the same time. Please pray for safe travels and a quick recovery for Bailey and her family.
Connie was weighed again today and is up another 1.5 oz. He's 22 pounds even now--such a big boy! Tomorrow he goes to Dr. Brady (GI doc) for a follow-up. I'll update again after the appointment.
Please say some prayers for another heart family we know, the James'. Their daughter, Bailey, who I've mentioned before, is getting ready for her big Double Switch surgery like Connie had. It is set for next week. She has had several operations already to get her heart ready for the big one. They are hopeful for her to finally get her big repair and nervous at the same time. Please pray for safe travels and a quick recovery for Bailey and her family.
Wednesday, January 30, 2008
Weight Gain
Connie was weighed this morning (right after he threw up his morning feeding) and his weight is still climbing nicely. He was up another few ounces from last week and is now 21 lbs. 14.5 oz. Yesterday was his first day of getting 10 more mL (1/3 of an oz.) in each of his four daytime feedings and we decreased his overnight feeding by 40 mL. The goal being to get him off of the continuous overnight and strictly on daytime feeds, either by mouth or enterally. This is a slow process, for sure, but one we are confident that he can achieve in God's time. Our OT said yesterday that he is making wonderful progress, faster than her other clients with similar feeding issues. Guess he's a bit competitive. . .I wonder where he gets that from ;) Of course, today he's only taken in 5 mL of milk and 7 mL of water. I blended up our leftover meatloaf, carrots and potatoes from last night's dinner for him for lunch and served it along with ritz crackers. He won't hardly take anything off the spoon from me, so I let him use his nuk brush to dip into the mixture. He sure covered his face and bib and arms, but I'm not sure if any got in. It's good experience for him nonetheless. We're hoping that once his self-feeding skills improve, he'll really take off. He's just still pretty averse to anyone going near his mouth and he wants the control. I forgot how nice it was to have a bald baby at feeding times. When Mary Kathleen was at this stage, she was bald so mealtimes were a bit less messy! He gets it in his hair and everything. She didn't mind being cleaned up. He can't stand to have his face wiped. We're really starting to see a little personality come out in him. Today he was playing peek-a-boo with his blue bunny elephant and putting it on his head all by himself. He also knows what it means when I say, "Give me a bite." He puts the food or whatever he has in his hand up to my mouth and offers it to me. It's so cute how he's starting to understand more and more. I'm just so proud of him!
Mary Kathleen appears to be completely back to normal based on her activity level, but she is still complaining about her throat hurting.
Mary Kathleen appears to be completely back to normal based on her activity level, but she is still complaining about her throat hurting.
Tuesday, January 29, 2008
Record Setting
In keeping with the record highs temps today (73 degrees), Connie has reached a personal best on liquid intake. He took about 50cc's (almost 2 oz.) from a take 'n toss sippy cup. It was 1/2 skim cow's milk and 1/2 breast milk. He liked it cold. He had some bites of banana and vanilla wafer as well. We really pushed him during OT today. We've got to get him to stop this business of pushing the spoon away. While he was drinking out of the open cup, he laughed and swallowed a lot of air and then the milk went down the wrong pipe and he started coughing and gagging and threw up everything he took in!
Mary Kathleen's fever hasn't come back today and she's eating again. Keep the prayers coming as she is still in that "contagious" stage since we're less than 24 hours away from the last fever.
Mary Kathleen's fever hasn't come back today and she's eating again. Keep the prayers coming as she is still in that "contagious" stage since we're less than 24 hours away from the last fever.
Fishing Partners
Connie has spent most of the last two days with his fishin' partner, Grandpa George. Grandpa graciously offered to come over to help after learning that Mary Kathleen had come down with a fever of 102.99 and was vomiting late Sunday morning. Terrified that Connie would get it, we wanted to do everything we could to keep them separated and minimize the risk of me transmitting it to him after handling her. She was miserable with a headache and sore throat to boot. All she wanted was to be held, sleep and be held some more. She had her three year old check up today anyway so we had the pediatrician check her out. He said she has blisters in her throat (ouch!) but the strep culture came back negative so he said it is a virus. Her fever went down after an early morning dose (yes, I've been up since 4:45) of a tylenol suppository and stayed down throughout the day, but started creeping back up just before bedtime. She was able to hold down her pedialyte, a banana , half of a jello cup, a popsicle and a few bites of toast today. This is marked improvement over yesterday where I don't think more than an ounce stayed down. She was acting more like her old self this evening, so we're hoping she's licked this bug. Please pray that Connie can escape the snares of this virus and stay healthy.
He has been drinking more volume from a cup. Yesterday he had at least an ounce and a half of very watered down orange juice out of an open cup. We don't really drink much juice and it's the only kind I had. In retrospect, citrus fruits probably weren't the best choice for him, as he ended up throwing up some later on. Tomorrow I'm going to try the same trick with some apple juice (also watered down) and see how he does. He's so over the yogurt game already. He only wants to participate if he gets to do it himself and he can't! It is SUCH A MESS! I let him try, make the mess and all, but I don't think any of it is getting in. He enjoys himself though, and right now that's the most important thing. He loves watching people chew gum and he makes chewing noises with his mouth while he watches. He tries to pop bubbles and is fascinated by the whole process. He is imitating a lot more lately too. He has this high pitch sound that he makes to tell you that he's ready to play the talking game. First he makes a noise and then I repeat it and then we continue and he laughs and keeps making up new sounds. They are all pretty high pitched. Grandpa says he's going to be in choir like his mama and he'll probably be a tenor, a beautiful tenor voice. His hair is finally starting to lay down a bit and isn't so funny looking on the top. The front almost needs a trim. I looked at him tonight and noticed that if you don't sweep it to the side, it hangs down over his eyebrows! I know he's my kid and all, but I swear he gets more beautiful every day. Tonight he woke up and was up from 9:45-11:30 and the whole time he was giggling and giving me "love pats" and being so sweet. I was so tired and all I wanted to do was pump so I could go to bed, but I didn't want to miss a single minute of enjoying him enjoying life. It's hard to describe, but I'm sure if you have kids, you understand at least on some level.
Thanks for checking in, and don't forget to pray that he stays healthy while this nasty bug works it's way to some other household.
P.S. Thanks Grandpa for all your help. Connie wanted me to add that he can't wait to steal your glasses again soon!
He has been drinking more volume from a cup. Yesterday he had at least an ounce and a half of very watered down orange juice out of an open cup. We don't really drink much juice and it's the only kind I had. In retrospect, citrus fruits probably weren't the best choice for him, as he ended up throwing up some later on. Tomorrow I'm going to try the same trick with some apple juice (also watered down) and see how he does. He's so over the yogurt game already. He only wants to participate if he gets to do it himself and he can't! It is SUCH A MESS! I let him try, make the mess and all, but I don't think any of it is getting in. He enjoys himself though, and right now that's the most important thing. He loves watching people chew gum and he makes chewing noises with his mouth while he watches. He tries to pop bubbles and is fascinated by the whole process. He is imitating a lot more lately too. He has this high pitch sound that he makes to tell you that he's ready to play the talking game. First he makes a noise and then I repeat it and then we continue and he laughs and keeps making up new sounds. They are all pretty high pitched. Grandpa says he's going to be in choir like his mama and he'll probably be a tenor, a beautiful tenor voice. His hair is finally starting to lay down a bit and isn't so funny looking on the top. The front almost needs a trim. I looked at him tonight and noticed that if you don't sweep it to the side, it hangs down over his eyebrows! I know he's my kid and all, but I swear he gets more beautiful every day. Tonight he woke up and was up from 9:45-11:30 and the whole time he was giggling and giving me "love pats" and being so sweet. I was so tired and all I wanted to do was pump so I could go to bed, but I didn't want to miss a single minute of enjoying him enjoying life. It's hard to describe, but I'm sure if you have kids, you understand at least on some level.
Thanks for checking in, and don't forget to pray that he stays healthy while this nasty bug works it's way to some other household.
P.S. Thanks Grandpa for all your help. Connie wanted me to add that he can't wait to steal your glasses again soon!
Thursday, January 24, 2008
Yay for Yogurt!
Connie made huge progress in oral intake this week. During his therapy on Tuesday he actually ate at least 3 tbsp. of vanilla yogurt. He wasn't crazy about the blueberry, but loved the vanilla. Later that day he had 3 tbsp of banana yogurt. Yesterday he ate gerber pureed carrots! About 3 tbsp. that time too. He's opening up for the spoon and swallowing. He's still not great about taking it off the spoon. He wants to put it in himself (control issues/fear) and he bites down on the spoon and won't let go for a few seconds. He's also loving water out of the Nuk sippy cup. He kind of stopped doing so hot with the bottle, mainly just chewing on it.
His weight went up another .5 oz. this week. He had a huge bm right before the weigh in, though.
We've sped up his feeds to go in over 1/2 hour rather than taking an hour to go in. He's tolerating that well. By the end of the week or early next week we'll bump up his 4 daytime feeds to 170 mL each time and reduce the overnight feeding by 40 mL. Hopefully we can keep that trend going until he is off the overnight continuous feeding and only eats during the day (like most humans!)
Sorry that the updates have slowed down. We don't have much news and haven't been out so we don't have much to talk about! No news is good news, that's for sure!
Mookie is turning three tomorrow and is so excited about her "blue bunny cake" that we'll be having.
His weight went up another .5 oz. this week. He had a huge bm right before the weigh in, though.
We've sped up his feeds to go in over 1/2 hour rather than taking an hour to go in. He's tolerating that well. By the end of the week or early next week we'll bump up his 4 daytime feeds to 170 mL each time and reduce the overnight feeding by 40 mL. Hopefully we can keep that trend going until he is off the overnight continuous feeding and only eats during the day (like most humans!)
Sorry that the updates have slowed down. We don't have much news and haven't been out so we don't have much to talk about! No news is good news, that's for sure!
Mookie is turning three tomorrow and is so excited about her "blue bunny cake" that we'll be having.
Wednesday, January 16, 2008
Teething?/Cold?/Separation Anxiety?/All of the Above?
We're struggling here! Connie has had a runny nose and sneezing for a couple of days. He's fussy, not sleeping well and overly clingy. He wants to be held all the time which is very different for him. He has been throwing up more (almost every feeding) because of all the drainage so yesterday the GI switched him to 1/2 milk, 1/2 pedialyte. We're not sure what is going on, but mysteriously he's gaining weight! His weight today was up 5.5 oz. from last Friday. Maybe the extra 30 cal./day from the fortifier is helping.
The good news is his lungs sound clear and the drainage is also clear. The pediatrician says we can't give him anything to "dry him out" because they are no longer giving cold medicines to babies. So, guess we'll just ride it out unless he gets a fever or something.
The good news is his lungs sound clear and the drainage is also clear. The pediatrician says we can't give him anything to "dry him out" because they are no longer giving cold medicines to babies. So, guess we'll just ride it out unless he gets a fever or something.
Thursday, January 10, 2008
GI Doctor Update
We're home from Dr. Brady's now. He weighed 21 lbs. 6.5 oz. That's up one ounce since last Friday. She was happy to hear he's vomiting less and trying new textures and tastes. She is still (Thank God!) in agreement with us that we'll give him more time to get back to eating orally. She just thinks that with all the development he's doing, it's definitely out of the range of possiblility. Also, the main reasons for doing surgery for the g-tube (and in his case repositioning the pacemaker) would be if he is pulling it out constantly and can't stand it in there or if it is prohibiting him from developing. It is doing neither so he's fine with it in unless things change. We are going to try to sneak some extra calories in his overnight feeding by adding one scoop of Progestimil. It is a special formula that is supposed to be super easy to digest and shouldn't cause any upset tummy. If he tolerates that for a week we'll add two scoops which would bump him up to 24 cal feedings at night. Then if he tolerates that for a week or so we can start adding it to his daytime feeds. We'll just have to see how he does. Basically now he's just maintaining weight and she'd like to see him gain some more. She did say that my milk is the easiest to digest and so after he turns one he will stay on it rather than switching to whole cows milk. I'm kinda bummed b/c I was looking forward to the end of pumping, but I'll try to stick it out if it's the best thing for him. She said if I can't take it and want to stop, by all means she can find something he can digest (they even make formulas that are predigested!) such as Alimentum, but I know those are really expensive so if I can, I'm going to try to just stick it out a bit more and pray he starts eating more food soon! We go back in 1 month and that time see the nurse practitioner.
Tomorrow he will get this month's dose of his RSV vaccine (synagis).
Either he isn't crazy about sleeping in the closet (don't worry, the doors are off!), is overtired at night when his nap is cut short, has a new case of separation anxiety, or all of the above. Last night it was a three hour process to get him to bed for the night! He got so mad he made himself throw up. I could tell he was not having reflux because he could lay down just fine if I was in there. Once I left, he screamed bloody murder. So, if he were "normal" I'd probably give him a few nights of cry for 10 min, check on him, reassure him, let him cry some more. But since he's not the crying makes more phlegm which makes him gag which makes him throw up which makes him not gain weight! If I go in there and pick him up then he learns bad habits but keeps his food down. It is so hard to know what to do sometimes! Parenting. . .such joy (yes, that was said sarcastically)!
Tomorrow he will get this month's dose of his RSV vaccine (synagis).
Either he isn't crazy about sleeping in the closet (don't worry, the doors are off!), is overtired at night when his nap is cut short, has a new case of separation anxiety, or all of the above. Last night it was a three hour process to get him to bed for the night! He got so mad he made himself throw up. I could tell he was not having reflux because he could lay down just fine if I was in there. Once I left, he screamed bloody murder. So, if he were "normal" I'd probably give him a few nights of cry for 10 min, check on him, reassure him, let him cry some more. But since he's not the crying makes more phlegm which makes him gag which makes him throw up which makes him not gain weight! If I go in there and pick him up then he learns bad habits but keeps his food down. It is so hard to know what to do sometimes! Parenting. . .such joy (yes, that was said sarcastically)!
Saturday, January 5, 2008
Eating Update
Connie has been working hard and making notable progress with his physical development the past couple of weeks but his oral intake seemed to decline somewhat. The OT said that a decrease in appetite goes hand in hand with teething and since he's gotten a new tooth and another about to come through, it could explain things. He had been taking an average of 6-9 mL of milk with each feeding or at least 2X/day. With the holidays there was a stretch there where we didn't do a whole lot of other tastes/textures unless there was some table food that was safe for him to try (orange jello salad, potato casserole, etc.) but suprisingly, he took mashed bananas--even off a spoon--this week for the first time. We think he may actually prefer "real" food rather than baby food. He wasn't doing much from the spoon let alone closing his lips around it, but now we can get him to take two or three "bites" in one sitting. He has also has tried (and liked) some summer sausage and ritz crackers. Most of it is spit out, but this is normal when kids are learning to feed from a spoon. Today he took 16 mL (1/2 an ounce) of milk from the syringe in addition to his three bites of banana. We are so proud. On a side note, his PT, who hadn't seen him since the Friday before Christmas, was stunned at how much stronger he's gotten. She said that right now he's really in that transition time between sitting and going to all fours and once he gets it in the next few weeks he'll really take off from there. The transitions are the hardest, especially this transition for him. She said between his reflux and his chest wounds that it just isn't comfortable to put weight on your arms and learn to crawl. He is even standing with help at the couch for a few minutes! He looks so funny (and tall!) in that position. I guess because we're not used to seeing him like that.
I'm thinking of turning my closet into a mini-nursery! The deal is, Connie is getting a little big/mobile for the port-a-crib that is set up in our room. I think he'd enjoy a little more space, but I'm not ready for him to be back in the kid's room because I'm afraid he'll disrupt Mary Kathleen's sleep too much and I'm worried about him getting strangled in his feeding tubing and me not hearing all the shuffling like I would if he's in our room. So, I'm thinking of putting his crib into the closet and just moving those clothes down to the laundry room. We usually get dressed down there anyway because we don't want to wake him in the morning or at night by using our master bath.
Greg's company had their annual insurance rate increase this past month and the whole group had a 62% increase so our premiums all went up as well. That means that our portion (Greg's payroll deduction) of our family premium went up 274%. We're bumming about this, but feel very thankful that his company is still covering the majority of the premium. We are also confident that God will provide for all that we need. There is no lifetime max on this plan, though, so we are hoping they stay with this plan or a similar one.
Speaking of medical costs, we were pleasantly surprised to learn about a fundraiser for Connie that was held in Chicago this fall. Greg's brother and sister-in-law, Dave and Michelle, organized and conducted a raffle to benefit Conway's medical fund and it netted $2290! They bought an iPod and raffled it off, along with some donated prizes and it was a huge success. Thank you guys for your efforts and to all who took part in the raffle. What generosity! We also raised $172.50 and the Sharkey's fundraiser on 12/27! Thank you to all who attended and donated, especially Carol Stadler, Kathy Brown, Laurie Malloy, Kate House, Marge & Orville Schoene, Beth Eudy and Judy Schoene . Connie is so blessed to be loved by so many!
We go to the GI doctor tomorrow, so we'll likely update after that appointment.
Have a good day!
I'm thinking of turning my closet into a mini-nursery! The deal is, Connie is getting a little big/mobile for the port-a-crib that is set up in our room. I think he'd enjoy a little more space, but I'm not ready for him to be back in the kid's room because I'm afraid he'll disrupt Mary Kathleen's sleep too much and I'm worried about him getting strangled in his feeding tubing and me not hearing all the shuffling like I would if he's in our room. So, I'm thinking of putting his crib into the closet and just moving those clothes down to the laundry room. We usually get dressed down there anyway because we don't want to wake him in the morning or at night by using our master bath.
Greg's company had their annual insurance rate increase this past month and the whole group had a 62% increase so our premiums all went up as well. That means that our portion (Greg's payroll deduction) of our family premium went up 274%. We're bumming about this, but feel very thankful that his company is still covering the majority of the premium. We are also confident that God will provide for all that we need. There is no lifetime max on this plan, though, so we are hoping they stay with this plan or a similar one.
Speaking of medical costs, we were pleasantly surprised to learn about a fundraiser for Connie that was held in Chicago this fall. Greg's brother and sister-in-law, Dave and Michelle, organized and conducted a raffle to benefit Conway's medical fund and it netted $2290! They bought an iPod and raffled it off, along with some donated prizes and it was a huge success. Thank you guys for your efforts and to all who took part in the raffle. What generosity! We also raised $172.50 and the Sharkey's fundraiser on 12/27! Thank you to all who attended and donated, especially Carol Stadler, Kathy Brown, Laurie Malloy, Kate House, Marge & Orville Schoene, Beth Eudy and Judy Schoene . Connie is so blessed to be loved by so many!
We go to the GI doctor tomorrow, so we'll likely update after that appointment.
Have a good day!
Tuesday, January 1, 2008
New Year, New Skills, New Discoveries
Connie continues to progress. Here's proof! He's bouncing in the exersaucer, especially when he watches his sisters jump on the trampoline. He discovered his first balloon yesterday and watching him play with such joy and wonder was amazing. We also learned that he does not like the sound of a drill. Greg has been building shelves downstairs to house all of these new toys that have accrued since Christmas and Connie is not a fan of the loud noises. I told Greg he probably has memories of the OR when they opened his chest. He has never been so averse to a noise before, be he seems genuinely scared! Anyway, here's the new video.
Friday, December 28, 2007
Finally!!
Connie's nurse came to the house this morning weigh him and he finally broke the 21 lb mark! His weight today was 21 lbs. 5.5 oz. That's a 9 oz. gain in one week! He had been up to 21 and then lost and stayed between 20 lbs. 7 oz and 20 lbs. 15 oz for over a month but finally he's gaining again. I guess either he ate a few too many Christmas cookies or maybe I did and my milk was higher calories than normal (ha ha)! Yesterday the OT was so impressed to hear that he loved whip cream and even took it eagerly from a spoon as well as fed himself (put to his mouth and tasted) some orange jello salad, cranberry salad and potato casserole. He performed his whip cream tasting for her during her visit. She tried to expand his palatte (sp?) by offering him some sour tastes. We started with pickle juice and he responded by vomiting so much that it even came out his nose. Poor fellow. He had been doing so well and apparently was not in the mood for sour tastes. Maybe someday!
He continues to get stronger physically and has totally mastered sitting without support. He was reintroduced last Friday to the exersaucer and has been tolerating increasingly longer periods in it ever since. I think yesterday he was in for about an hour just rocking, bouncing and watching his sisters bounce on their new trampoline. When you are holding him he loves to bounce (we call it dancing) or rock. His new trick, one in which he was perfecting last night from 10:30-12, is where he makes himself free-fall backwards and you catch him and help him pull back up only to do it again over and over. He laughs hysterically the entire time. I can't wait for someone to take a video of him doing it. That game shows me that he is gaining trunk strength bigtime.
The dietician, Jenni, came today and we set the goal to increase him another 10mL per bolus feed in a month if he continues to tolerate the 160 feeds. If that happens, we can start backing down on his overnight feeds with the hope that eventually he will be like a "normal" kid and just eat during awake times. This would also allow him to be hungrier during the day and have more motivation to eat orally.
As you can see, we've been busy learning, relearning and loving this year. We hope that 2008 brings about continued improvement and more miracles of recovery for Connie and we pray that you all find the new year to be full of hope and health as well.
He continues to get stronger physically and has totally mastered sitting without support. He was reintroduced last Friday to the exersaucer and has been tolerating increasingly longer periods in it ever since. I think yesterday he was in for about an hour just rocking, bouncing and watching his sisters bounce on their new trampoline. When you are holding him he loves to bounce (we call it dancing) or rock. His new trick, one in which he was perfecting last night from 10:30-12, is where he makes himself free-fall backwards and you catch him and help him pull back up only to do it again over and over. He laughs hysterically the entire time. I can't wait for someone to take a video of him doing it. That game shows me that he is gaining trunk strength bigtime.
The dietician, Jenni, came today and we set the goal to increase him another 10mL per bolus feed in a month if he continues to tolerate the 160 feeds. If that happens, we can start backing down on his overnight feeds with the hope that eventually he will be like a "normal" kid and just eat during awake times. This would also allow him to be hungrier during the day and have more motivation to eat orally.
As you can see, we've been busy learning, relearning and loving this year. We hope that 2008 brings about continued improvement and more miracles of recovery for Connie and we pray that you all find the new year to be full of hope and health as well.
Tuesday, December 25, 2007
Merry Christmas!
We've had a busy time these last few days, but then, who hasn't? Connie has been to four Christmas parties (three have been family parties) and has done so well adjusting to being out of the house and held by others. I feared that being with me so much he'd be particularly strange around new faces but that hasn't been the case at all. He loves smiling at all the extended family. Starting on evening of the 21st, he began throwing up again and by yesterday he was throwing up all feeds except the continuous overnight. He threw up his tube on the way to Christmas Eve and I had to pull over and replace it on Hwy 270! So much for that Christmas outfit. When we got to Terri's he had to put his pj's on and we didn't get to show off his pretty clothes:( Then Mookie spilled her drink on her dress and was cold and wet, I spilled Connie's milk before pouring it in his pump and then about half way through he started fussing like crazy. We called it a night before 8pm! Mary Kathleen won't walk anywhere on her own anymore (perhaps jealousy that he gets carried) so that made for a lot of fun. Then on the way home he threw up again. That's when I started crying. I told God I wanted Connie to get a break from the throwing up and that it was Christmas. I just cried and cried all the way home last night begging God to make it better. Do you know that Connie didn't throw up at all today? I guess God heard me. Hope so.
Anyway, thank you all for your support and prayers and cards this year, especially at Christmas. What a year it has been! Today is a good reminder that while we have a long road ahead, we need to stop to celebrate. Celebrate our Lord's birth and celebrate the gift we've been given this year in Connie.
Anyway, thank you all for your support and prayers and cards this year, especially at Christmas. What a year it has been! Today is a good reminder that while we have a long road ahead, we need to stop to celebrate. Celebrate our Lord's birth and celebrate the gift we've been given this year in Connie.
Friday, December 21, 2007
Wednesday, December 19, 2007
Vomiting/GI Update
Conway is currently receiving his feeds over one hour. We had to slow down the rate a couple of weeks ago because the vomiting increased again. This has helped, but it seems, as usual, that it slowly creeps back in. Now we are waiting until he is upright for awhile and gets several good, productive coughs before we start a feed. Getting rid of the mucous first seems to help.
Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.
Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!
Dr. Brady (GI doc) called yesterday to say she got the swallow study results and discuss a plan. I told her that we ran out of formula during the snow and he seemed to keep his feeds down better so she gave us permission to stop fortifying for a couple of weeks up to a month and time, his weight, and his vomiting will tell if it indeed helps since he seems to wax and wane on the vomiting anyway. He has good weeks and bad weeks so hopefully it isn't just a good week and it actually is a step toward less vomiting.
She is still hesitant (thankfully) to proceed with previously discussed surgical options. She is just so pleased with his neuro, physical and cardiac progress that she hates to interrupt that with an invasive procedure and recovery. She isn't even sure that the surgeons would be able to move the pacemaker AND place the g-tube all in the same surgery. What a bummer that would be-to have the pacemaker moved and then have to go back to have the g-tube at a later date! She reiterated that the g-tube is not going to fix the reflux. It would cut down on the irritation that the tube causes and maybe make it more pleasant to swallow/eat orally. She just is very reluctant to put him under anesthesia for three hours (the tube is only a ten minute procedure, but the pacemaker moving is a different story). When asked about the fundoplication she said she really doesn't see that in his future, but she'll talk more with Dr. Bromberg and we'll talk again in a few weeks.
Connie has been working hard on oral practice. We were given the all clear to introduce more solids so we were thinning stage one baby foods with fruit juices or breast milk and giving to him via syringe. He generally takes about 6-9 mL of solids at each session where we try this (usually about 2X per day). At regular mealtimes, if he is awake, he is offered a variety of textures and finger foods and will put them up to his mouth to taste but does not ingest them. Lately he has shown a preference for liquids, especially warm milk. It is a real chore to get the thicker stuff into him, but he has been eagerly going after the syringe when it has breast milk in it. Today he excitedly "drank" (and I use that term loosely) 22.5 mL of milk out of a combination of three methods of feeding. We started with the syringe and then advanced to the medicine cup pacifier after I noticed he was trying to chew/suck on it. He can't control how much he gets with the syringe so with the paci he can bite/chew/suck and get rewarded with some liquid. I then tried the take and toss kind of sippy cups with a lid. These lids prevent major spills and slow down intake, but don't have to be sucked hard on like the no-spill playtex kind of cups. He went back and forth between the paci and the cup, playing with one while drinking out of the other. All in all, when he was done, he had taken 22.5 mL. This is a first! Granted, he didn't swallow near that much. His oral motor control is not good enough to have a very organized swallow so much of it dribbled out. The most exciting thing about this is his WILLINGNESS to participate in eating! Please continue to pray for progress in this area. It would be wonderful if he was able to mow down (or at least tolerate) on chocolate birthday cake by the time he turns one!
Monday, December 17, 2007
Cardiology Update and More!
Connie had an appt. at 11 am today with Dr. Bromberg. I was a little anxious over the weekend about what I might hear, but didn't think too much about it. As soon as I turned the stroller around so that Connie was facing Colleen, the nurse, my fears were relieved. She and the other nurse were falling over themselves commenting on how good he looked and how good his color was (his color has never really been an issue though, like most heart kids) and how big he was, etc., etc. They even remarked at his crazy hair. His weight today was 20 lbs. 11.6 oz. Down a bit. Funny, they all think he looks so much bigger and yet his weight hasn't gone up the last month. Dr. Bromberg even said that this is the first time he's seen him look "like a normal baby" and not "so skinny". His length is 31.5 inches, which is taller than before. I think just last week at his well baby visit he was 30 inches.
Then they asked me a bunch of questions about his endurance, sweating, breathing, etc. Colleen listened to his chest and took his blood pressure which was "perfect". Then they checked his pacemaker with four little electrodes on his chest which he tried to pull off constantly. He started out a little quiet and shy and quickly turned into a normal, curious 9 month old. He wanted to investigate everyone and everything in the office. When Dr. Bromberg came in and was standing next to him while he looked over the pacemaker stuff, Connie wanted his watch and ID badge. Dr. Bromberg said he couldn't see why anyone would call him developmentally delayed other than the fact that he's not crawling yet. He was so pleased with everything. He took him off the Spironolactone (potassium sparing diuretic) and decreased his lasix (other diuretic) in half. He said that at the next visit, he may come off the lasix altogether! Even though his bp is perfect, he is increasing his Enalapril (bp decreaser) from 1 ML, 2X/day to 1.5 ML 2X/day. This is in hopes that it will help the heart to pump a little stronger so that the leak is decreased and less blood regurgitates back down. We don't have to go back for three more months!
In related news, we got to talking about his GI issues and I asked him about the possibility that Connie's problems stem from a vagus nerve injury during surgery. He nodded like he had thought of that too. He said what makes him think that that isn't the case is that usually patients will also have a paralyzed diaphragm and/or paralyzed vocal cord. I asked what possible treatments there were if that were the case and he said that nothing could really be done, that it usually spontaneously heals on it's own. He said he was pessimistic about that for Connie because it would have likely healed by now. His personal, "layperson" opinion is that a fundoplicaton and g-tube are in order here. I guess we shall see. Today I'm just reveling in the glory and the light of this wonderful blessing we've been given in having such a good appointment. Praise God!
However (dramatic pause), there is never a dull moment around here and never a positive note that isn't drowned out by a negative one. Early Sunday morning, Mary Kathleen fell out of bed and complained that she hurt her shoulder. Her behavior was not right and she didn't "get over it" quickly at all. I called the doctor's exchange and they recommended we follow up with our ped. today. We did and he suspected a broken collarbone. He said it is easy to fracture and fairly common in kids. He sent us downstairs to an orthopaedic doctor where she had her first (hopefully last) x-ray. She did very good and was so brave for all of it. She surprises everyone that she isn't afraid of procedures or shots or whatever. The x-ray showed that her collarbone is indeed broken. The doctor said that children this age heal very quickly (2-3 weeks). The remedy for this type of injury is limited to wearing a sling. So, her right arm is in a cute little dinosaur sling. She doesn't like it one bit and has reminded me of that fact several times in the past couple of hours. She is to wear the sling until she appears to be using it a lot more and her activity level is to be dictated by her. The only limit is that she is to stay off the monkey bars and avoid climbing. She has no interest in that right now anyway with the pain she's experiencing so that shouldn't be a problem. She is allowed to have motrin every six hours if necessary. She looks like such a big girl with her sling. I think I was that age when I had my first broken bone. I only hope she doesn't have as many as I had! We go back for a follow-up x-ray in three weeks.
So, $100 in copays, three office visits at two different hospitals and six hours later, we are home and staying put. Just when I complain about not getting out of the house because of being homebound with Connie for the winter cold and flu season, I get to spend all day driving around with them! Woo hoo!
Then they asked me a bunch of questions about his endurance, sweating, breathing, etc. Colleen listened to his chest and took his blood pressure which was "perfect". Then they checked his pacemaker with four little electrodes on his chest which he tried to pull off constantly. He started out a little quiet and shy and quickly turned into a normal, curious 9 month old. He wanted to investigate everyone and everything in the office. When Dr. Bromberg came in and was standing next to him while he looked over the pacemaker stuff, Connie wanted his watch and ID badge. Dr. Bromberg said he couldn't see why anyone would call him developmentally delayed other than the fact that he's not crawling yet. He was so pleased with everything. He took him off the Spironolactone (potassium sparing diuretic) and decreased his lasix (other diuretic) in half. He said that at the next visit, he may come off the lasix altogether! Even though his bp is perfect, he is increasing his Enalapril (bp decreaser) from 1 ML, 2X/day to 1.5 ML 2X/day. This is in hopes that it will help the heart to pump a little stronger so that the leak is decreased and less blood regurgitates back down. We don't have to go back for three more months!
In related news, we got to talking about his GI issues and I asked him about the possibility that Connie's problems stem from a vagus nerve injury during surgery. He nodded like he had thought of that too. He said what makes him think that that isn't the case is that usually patients will also have a paralyzed diaphragm and/or paralyzed vocal cord. I asked what possible treatments there were if that were the case and he said that nothing could really be done, that it usually spontaneously heals on it's own. He said he was pessimistic about that for Connie because it would have likely healed by now. His personal, "layperson" opinion is that a fundoplicaton and g-tube are in order here. I guess we shall see. Today I'm just reveling in the glory and the light of this wonderful blessing we've been given in having such a good appointment. Praise God!
However (dramatic pause), there is never a dull moment around here and never a positive note that isn't drowned out by a negative one. Early Sunday morning, Mary Kathleen fell out of bed and complained that she hurt her shoulder. Her behavior was not right and she didn't "get over it" quickly at all. I called the doctor's exchange and they recommended we follow up with our ped. today. We did and he suspected a broken collarbone. He said it is easy to fracture and fairly common in kids. He sent us downstairs to an orthopaedic doctor where she had her first (hopefully last) x-ray. She did very good and was so brave for all of it. She surprises everyone that she isn't afraid of procedures or shots or whatever. The x-ray showed that her collarbone is indeed broken. The doctor said that children this age heal very quickly (2-3 weeks). The remedy for this type of injury is limited to wearing a sling. So, her right arm is in a cute little dinosaur sling. She doesn't like it one bit and has reminded me of that fact several times in the past couple of hours. She is to wear the sling until she appears to be using it a lot more and her activity level is to be dictated by her. The only limit is that she is to stay off the monkey bars and avoid climbing. She has no interest in that right now anyway with the pain she's experiencing so that shouldn't be a problem. She is allowed to have motrin every six hours if necessary. She looks like such a big girl with her sling. I think I was that age when I had my first broken bone. I only hope she doesn't have as many as I had! We go back for a follow-up x-ray in three weeks.
So, $100 in copays, three office visits at two different hospitals and six hours later, we are home and staying put. Just when I complain about not getting out of the house because of being homebound with Connie for the winter cold and flu season, I get to spend all day driving around with them! Woo hoo!
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