Cool kid...

I had to add a picture. 

The Meyer Center for Developmental Pediatrics

Today Miles had his evaluation from the Meyer Center for Developmental Pediatrics at Texas Children's Hospital. We were late, about 20 minutes, but we got right in. We were on the waiting list for about 1 yr for the evaluation. I was so terrified that we would get there and they would say they couldn't see us because we were late. We saw Dr. Madduri (she isn't on the TCH website). We liked her, Miles liked her too. She said that Miles is at an 18 month level for his speech. She suggested that we get him tested by the public schools closer to his 3rd birthday to start services there. He is on level for just about everything else. She said absolutely no to Autism (we knew that) and that he may have issues later on with reading, reading comprehension, and essay writing. She also recommended that Miles have an MRI to make sure he doesn't have any damage from low/lack of oxygen from birth, or from when his shunt narrowed, or when he had his...whatever it was, when he stopped breathing and turned blue and needed rescue breaths but they swear it wasn't a tet spell...from that. I would like to see what the spot on the back of his head looks like where he had the pressure sore after his 2nd surgery.

Anyway...He did go to the ER on friday of last week. He is okay. That night he had a low fever, 99.5...then in no time it was 102.5. Dr. T says that 102.2 is the magic number. Plus, his heart rate went up, he was increasingly lethargic and not responding well. This happened in a matter of minutes. It really freaked us out, hence the ER. We got there at 9pm. He puked all over the lobby. We were seen in triage at 9:30 and then waited until 12:39 for a room, yes 12:39. When we got in the room, his temp was 102 still, they gave him more tylenol. His pulse ox goes down when he has a fever...does anyone elses kid do this? He is normally 97%-ish but when he had a fever it was 93-94%?? Anyway, his pulse ox stayed pretty steady, his heart rate was up a little bit. Normal for him is about 130-135 but when we got there it was 157. Still, the docs didn't seem concerned, hence the 4 hour wait. Although, I should say that we got in before a kid that came in on an ambulance. He had a seizure and was not breathing when EMS got there, but by the time he got to the ER he was fine...well not FINE, but you know what I mean. When we were #1 on the list, they were #12. I felt a little bad. Anyway, they checked his urine (because of the recent not going for 17 hrs and saying 'ow' when he pees), it was fine. They did a blood count and his white count was low--virus. I cannot tell you how much I hate to hear, "We think it is a virus." Because the next thing is, "Just watch him, if he gets worse, come back." No treatment, no nothing to make him feel better. But, he is over it now, I think. He has had no fever since Saturday. His sleeping is a little off. He has been waking up at 4:30 screaming and pointing to his chest (like he is pointing at himself, not his heart) and saying 'no mama.' He was doing this before the ER so it isn't just me, I think he says 'no dada' to Sean. If not, maybe it is just me :). btw...we were in the ER until 7:30am Saturday. Sean let me sleep in until noon (he is a good man!).

I have enjoyed my days off although three of them were spent at Texas Children's Hospital. Thursday, speech therapy, Friday/Saturday, ER, and today Tuesday, Meyer Center.

So next is Sept.7, Gastric Emptying Scan and on Oct 3, MRI (he has to be sedated for that one--regular sedation no CV anesthesia--woohoo). I plan to update before then, but we may not be that exciting for a while (thank God!)

btw...Riley's open house at school is tonight. He is doing a great job in Preschool! He is sad when we pick him up because he likes to stay and play :) He goes to Our Saviour Lutheran School

I hope everyone is having a very uneventful week :) ~Becky

My conundrum of a boy...

This is an old picture, but cute.

Miles and Riley were making Labor Day cards for their grandparents. Ya know, cause Hallmark hasn't come up with cards for this holiday, so we had to make own! They were finger painting and making a royal mess! Miles had his hand covered with red, yellow, blue, purple, green and brown, he looks at me with this oh so cute face and says "Boop!" I was very cute!

So in speech therapy today, Miles was to work on finishing words. He will say 'out' but it is 'ou' and he will say ball but it is 'ba.' Man, he did not like actually working instead of playing (and learning at the same time). He threw himself down on the floor and had a little fit. He eventually came around, after she put the matching (finishing the word) game away. He did try to say bounce, roll...a few others that are escaping me right now.

Anyway...more testing on the horizon for Mr. Miles. He up-chucks all the time. Well, he is a fine balance of erythromiacin and miralax so that he a. won't puke when he poops and b. will digest his food. The other day he had a snack at 3, took his erythromiacin at 5 and 'gave me' his 3 o'clock snack at 7:30 and again at 8:15. So...either the medicine isn't working or he isn't digesting his food. What he 'gave me' looked just like he had taken it off of his plate. It certainly didn't look like it had been sitting in acid in his stomach for the last 4 1/2 hours. His gastro, Dr. Krishna, suggested that Miles have a gastric empyting scan. So this has been scheduled for Sept 7 @ 9am. This will be lots of fun (I can't get it to stop underlining!) the test is in the nuclear medicine department at TX children's. It will take an hour and a half. He has to be strapped to a table for the whole deal while they take pictures of his food digesting. This is after he eats eggs, oatmeal or milk with the nuclear meds in it. I cannot imagine that this will be fun. We did this before when he was about 6 wks old. We found that he had pyloric stenosis and spasms of his pyloris. The next thing, if we aren't happy with the results of this GE scan, is an endoscopy. That is more sedation, more intubation, more tubes, more low pulse ox and more convincing nurses that his pulse ox really is okay - for him. I also may have to call his urologist...he held it the other day for 17 hours! Checked with the doc (not the normal doc, she is out on maternity leave---congrats Dr. T), she didn't seem concerned because he still had tears and sweat. Today, he keeps pointing to his pants and saying "ow." Then peed...alot...like through his pants, he hasn't done that in a while. Could we be having our first UTI? He has 'outgrown' his urinary reflux.

But as I sit here in my chair while he is trying to spin me in circles, saying "doh ma, doh woun" I am filled with such happiness just being his mommy :)

Sorry for all the technical words this time :) Oh, the other thing he did while he didn't pee for 17 hours, besides vomit 6 times and the last time was green, his legs turned a purpleish/blueish color while I was holding him. His head was on my shoulder, my hand on his back and bottom. The cardiologist hasn't called back yet, the pediatrician thought I should check with him. While the legs were colorful, his pulse ox was normal. It happened twice. When I set him down in the sitting position, they went back to pink. He must be wired funny because I would have thought it would have been the other way around. Again, the doc (not the normal doc) wasn't concerned...well, I can't go that far. She said she has no idea what could be wrong. She said check with his cardiologist, Dr. Justino and his gastro, Dr. Krishna. So, that is what I did.

btw...I am on a mini vacation! Until the 30th I am off work! Just me and Miles during the day and I get extra special time with both of my boys!

2 yr Reflection...

I am a few days late, but Sunday was the 2 year anniversary of Miles heart repair surgery. Here is a picture of Miles after all his chest tubes were out and he was extubated, he was 15 weeks old, two weeks after the surgery. The yellow blanket is his SAAM blanket. That stands for Security Against All Monsters :) A little boy named Brian made this. He saw his friend Sam in the hospital for something (I can't remember what for) and he was scared for him so he made him a SAAM blanket. Then he decided to make them for all kids so that they won't be scared. My friend from home, Louisville KY, got it for Miles. (Thanks James :) The other blanket was made by the volunteers at the hospital, it actual has fortune cookies on it, the nurse said it was the only thing that was not girly. If it is not flowers, we will take it. Anyway...on to reflecting over the last two years...

Of course, you can't come upon a date like this and not think about all that got you here. July 26th '04, I took Miles to the pediatrician and said, "I don't know what it is, but there is something wrong with my son, I can feel it. He isn't himself, he is crying alot and I think he looks more blue." He (who by the way, is no longer our pediatrician) says, "He is fine, he just has colic." And sends us home, he never even checked his pulse ox and I must have had my head in the clouds because I went without asking for one. But, when I got home I called the cardiac center and left a msg for our cardiologist and he told us to come in. He looked at Miles and told us we weren't going anywhere. He, Miles, had a cath and we found out that his BT shunt had narrowed. It lasted 10 weeks. We were really looking forward to getting the year out of it that they said we would. Anyway...most of this is on Miles page on Tchin. After his surgery is when the real fun started!!! We got a new pediatrician, do you blame me? Dr. Tiwari is awesome, she takes good care of us.

Shortly after Miles recovery he started PT. He didn't want to move, let alone walk :) He walked at 17 months, while we were stranded during the 'evacuation' for Hurricane Rita at the Woodlands Christian Church. They were really good to us. He started talking...well...after a year of speech therapy...The words are coming out now like water or Wa as Miles would say. Today he said 'Done' and 'Ta-Da!' He actually said 'Hi' to our Jenna on the phone today. Today is her 10th birthday (that is another post coming soon). My littlest man is the coolest 2yr old ever, I'm pretty sure.

Anyway, I am so happy to have him here with us today. I just love my guys so much. I tell them everyday (well almost everyday), "I am really glad to be your mommy, I am glad God gave you to me to take care of and to love." Riley says, "I know mom, you say that everyday."
And I will keep saying it, and saying it....

~a very happy mommy~Becky

Keeping it Interesting....

He looks like that guy from Star Wars...
Can't remember what character...

[dad edit: they are called tusken raiders
thank you very much]




This is shrimp finger boy...gross but funny!

It's just fillings...

Miles had his day surgery today to get his fillings. He got 5 fillings in 4 teeth. He did well. We had CV anesthesia, Dr. Campos, he was great. We got there at about 7 am. They took him back to get his vitals and talk to the NP and we played for a while then took him to surgery at right about 9 am. The whole thing took about 45 minutes but we left to go home at about Noon. He took a while to wake up and then to convince us that his pulse ox was okay. It wanted to stay around 93% but when we got there intially it was at 97-98%. When we left it had been 95% for a few seconds. Anyway, he is asleep, where I will be momentarily. We will just watch him closely today and he should be back to normal by tomorrow.

When we walked down that hallway in day surgery where you hand them over, like we have done so many times now, I cried a little. Miles gripped Dr. Campos, started to cry and covered his eyes. My husband and I both got a little choked up. Then said, Why does everything have to be so tramatic? It's just fillings! But such is life with a CHD kid :) I wouldn't trade him for anything!

Off to nap time! ~Becky