Your eye is continuing to heal, but we are going to continue another week of antibiotics to be on the safe side. Today we tried the contacts again--and once again one popped out. This time we found it in your crib, hopefully in time to save it. You are so much more alert when your contacts are in--I love seeing my baby so curious!
This week we received sad news. One of our SLOS friends died mid-April. His name is Mathias and would have been 2 years old in June. His mom says he was doing great, outgrowing the vomiting, always laughing and happy, with his personality coming out more and more. I remember back in January when she wrote to tell us he was not recovering well from his cleft palate/ear tube surgery. She had asked the surgeon to give him FFP, a blood product that is recommended for kids with weaker immune systems, but he refused to even discuss it with the specialists. I was so frustrated for her at the time. Of course, we don't know if that would have made a difference, but it is a shame his mommy has to wonder. He just couldn't get over the infections, and one morning he wasn't looking like himself. As she was packing his food and meds to take him to the ER, he died peacefully in their home. Turns out he had pneumonia which led to congestive heart failure--number one cause of death for SLO kids.
My heart hurts for his family. Even though he had been having a tough time since the surgery, I am sure they didn't see this coming. He only had a temp of 99 the night before! A couple weeks ago you had a much higher temp and after calling the on-call doc, we decided to keep you home rather than risk whatever was hanging out in the ER waiting room. You are always such a healthy baby, I think I must take it for granted. You are such a trooper all the time, I think of you as being so strong. But you are still a tiny baby, and so now when you run a high fever and aren't yourself, I won't risk it and will just take you to Texas Children's. It's inconvenient, but better than waiting it out and regretting it later. Poor Mathias' mommy is blaming herself for doing what any of the rest of us would have done. I can't even imagine her pain, and I pray for her family continually.
Sunday, May 31, 2009
Sunday, May 24, 2009
May 24
Your eye is starting to look a little better, Boo Bear. Still red and swollen, but not nearly as much. I am hopeful that by Wednesday it will be well enough to avoid surgery.
Not much else going on these days. We practice eating a couple times a day, and it is going okay. I think you really do want to eat. Your tongue is learning to go to whichever side the food is on, you "chew" the food and slowly move it to the back of your mouth, and you are getting several good swallows in. You usually tolerate a few bites of very thin rice cereal mixed with some fruit before you get gaggy and try to throw up. Sometimes playing your "Jesus Loves Me Reindeer" will distract you enough to get through those moments. But inevitably you throw up and get angry. We are careful to encourage you to eat a few more bites before we stop, because I don't want you to figure out that throwing up is the way to end your feeding session.
Another thing we are working on is holding your head down. We all know what a pro you are in holding it back, but when it comes to tucking your chin, you don't have any practice. And that means you don't have any muscle strength. If we could get you to hold your head steady while looking down, we would make big progress in learning to support your head on your own. Of course, because of your eye infection we can't put in your contacts. But we will get there little one.
Tonight you threw up on Mama for only the second time in your life--that is very impressive considering you throw up several times a day! What a considerate baby you are!
Not much else going on these days. We practice eating a couple times a day, and it is going okay. I think you really do want to eat. Your tongue is learning to go to whichever side the food is on, you "chew" the food and slowly move it to the back of your mouth, and you are getting several good swallows in. You usually tolerate a few bites of very thin rice cereal mixed with some fruit before you get gaggy and try to throw up. Sometimes playing your "Jesus Loves Me Reindeer" will distract you enough to get through those moments. But inevitably you throw up and get angry. We are careful to encourage you to eat a few more bites before we stop, because I don't want you to figure out that throwing up is the way to end your feeding session.
Another thing we are working on is holding your head down. We all know what a pro you are in holding it back, but when it comes to tucking your chin, you don't have any practice. And that means you don't have any muscle strength. If we could get you to hold your head steady while looking down, we would make big progress in learning to support your head on your own. Of course, because of your eye infection we can't put in your contacts. But we will get there little one.
Tonight you threw up on Mama for only the second time in your life--that is very impressive considering you throw up several times a day! What a considerate baby you are!
Wednesday, May 20, 2009
May 20
You got to spend the night at Grammy and Papaw's last Friday! You have stayed overnight one other time when Daddy and I went to a conference, but this is the first time you have been gone while we were at home. It was so strange for Daddy and I to come home from work and you not be here. All evening I kept wandering into the living room and your bedroom to check on you, only to realize you weren't here. We definitely missed your sweet baby presence.
Monday we had a day full of doctors appointments. Your blood pressure was perfect! Since you haven't grown very much still (under 13 lbs) we don't feel comfortable cutting the dosage. But the theory is that you will slowly outgrow the hypertension, and wean yourself off the meds.
That morning you woke up with a swollen, red left eye. That's your "good" eye. The right eye turns inward and doesn't dilate on it's own--we see the doctor about it on June 11. But your left eye does a great job focusing and I know you see well out of it. So when it looked bad on Monday, I was a little concerned. However, you didn't have a fever and the pediatrician didn't seem to be super worried. I thought it was another sty, so I have been treating it as such. This morning it didn't look any better, so I called to get an appointment with Dr. Urso. He doesn't think your stitches from the ptosis surgery should be infected or rejected, because we should be past that window. All your wounds have been healed well for a couple weeks now! But anything is possible. Remember how Dr. Bloss said he has only had one other child in 30+ years have both anal stenosis and Hirschprung's? Yeah, Dr. Urso has only had one other child get an infection after the operation.
So here is the deal. Antibiotics for 10-14 days. We see Urso next week. If it doesn't get better quickly, we will have no choice to go back into the OR, remove the sling, wait for you to heal up, and then try again. We REALLY don't want that. So I will do my part with drops and meds and warm compresses and lots and lots of prayers. You do your part by telling all your white blood cells to go to your left eyelid and do their thing. Is that a plan?
Monday we had a day full of doctors appointments. Your blood pressure was perfect! Since you haven't grown very much still (under 13 lbs) we don't feel comfortable cutting the dosage. But the theory is that you will slowly outgrow the hypertension, and wean yourself off the meds.
That morning you woke up with a swollen, red left eye. That's your "good" eye. The right eye turns inward and doesn't dilate on it's own--we see the doctor about it on June 11. But your left eye does a great job focusing and I know you see well out of it. So when it looked bad on Monday, I was a little concerned. However, you didn't have a fever and the pediatrician didn't seem to be super worried. I thought it was another sty, so I have been treating it as such. This morning it didn't look any better, so I called to get an appointment with Dr. Urso. He doesn't think your stitches from the ptosis surgery should be infected or rejected, because we should be past that window. All your wounds have been healed well for a couple weeks now! But anything is possible. Remember how Dr. Bloss said he has only had one other child in 30+ years have both anal stenosis and Hirschprung's? Yeah, Dr. Urso has only had one other child get an infection after the operation.
So here is the deal. Antibiotics for 10-14 days. We see Urso next week. If it doesn't get better quickly, we will have no choice to go back into the OR, remove the sling, wait for you to heal up, and then try again. We REALLY don't want that. So I will do my part with drops and meds and warm compresses and lots and lots of prayers. You do your part by telling all your white blood cells to go to your left eyelid and do their thing. Is that a plan?
Wednesday, May 13, 2009
Visiting the Nursing Home
This past weekend you, Daddy and I went up to Copperas Cove, TX in order to stay over night in a nursing home there. We needed to complete a 24 hour stay to be eligible for the special Medicaid program we are on, and it is the only one in Texas to accept babies.
We had a good time that night, just the three of us hanging out. It was nice to have nothing else to do but sit in a room and be together. Early in the evening you and I were cuddling on the bed, and you rolled in my direction. When you put your hand on my face, you started laughing. Daddy asked if you thought my face "looked" funny and you laughed even harder. That made Daddy and I laugh, which made you laugh, and for several seconds we were all laughing together at the same thing. It was our first family joke! It was the best Mother's Day gift you could have given me.
I love how you are beginning to laugh at more and more things. I don't think it will ever lose its effect on Daddy and me. Everytime you start to chuckle, we stop what we are doing and focus on getting you to do it again.
We had a good time that night, just the three of us hanging out. It was nice to have nothing else to do but sit in a room and be together. Early in the evening you and I were cuddling on the bed, and you rolled in my direction. When you put your hand on my face, you started laughing. Daddy asked if you thought my face "looked" funny and you laughed even harder. That made Daddy and I laugh, which made you laugh, and for several seconds we were all laughing together at the same thing. It was our first family joke! It was the best Mother's Day gift you could have given me.
I love how you are beginning to laugh at more and more things. I don't think it will ever lose its effect on Daddy and me. Everytime you start to chuckle, we stop what we are doing and focus on getting you to do it again.
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