Friday at our weight check he gained 1.5 oz and is now 8#15.5oz. We need to be doing a little better than 1.5 for 3 days
2 years ago
Friday, May 30, 2008
OT appt
William had OT on Tuesday, and we started in the water, it brought out a lot of stuff that needed to be worked on around his rib change and shoulders.
Tuesday, May 27, 2008
Stellar Weight Gain
Williams been eating way better over the weekend. I was sure he would gain weight when he was weighed today, but I wasn't sure how much. He gained 7 oz!!!!! YEH!!! That's 4 days, almost 2 oz a day, that's more the type of gain we want to see so he can catch up with his brother. He's been eating 4-5 oz every 3-4 hour which is GREAT!!! If fact he's been eating closer to 5 oz when he eats. We've got OT therapy so I better grab lunch before we have to run out the door.
Friday, May 23, 2008
Pictures from Tommy's 2nd Birthday!
Can be found here:
http://www.flickr.com/photos/conradzone/sets/72157605223625587
I'm such a bad Mommy, I never posted the pictures from Tommy's 2nd birthday party on March 8th, but with everything that's happened since the 11th I hope you'll forgive me!
Thursday, May 22, 2008
ECI
We had our ECI evaluation today, and of course William qualifies. William ranks at a newborn level, and for as bad as his tests were, he is doing amazing is what they keep telling me. Someone that already has CP sometimes their head or arms or legs etc cannot be moved, and when he is asleep he is very loose compared to other babies that are worse.
Currently they don't duplicate services he's receiving else where, and he's getting OT, and ST else where right now, so they are going to do monthly service coordination, which means they will come out monthly and give suggestions for ways we can work with him in addition to the OT and ST and also check on him monthly to make sure he doesn't need more therapy. Also, once the home nurse visits are done they can have a nutritionist come out and check his weight and make recommendations for him.
Currently I'm suppose to go back to work around June 4th, but my husband and I have decided that I will stay home longer for William and pay for insurance with COBRA, as FMLA runs out after June 4th and at that point Raytheon will cease to pay for my insurance benefits while I'm on leave. I would give anything for William to not have these struggles, but as there's nothing at this point we can do to change that we as a family are going to do what's necessary to insure his health. At this point we feel it's best if I stay home longer to ensure he's eating and doesn't have to go back to the hospital for more NG feedings if he were to not eat well for a care provider.
Wednesday, May 21, 2008
HANDSOME BOYS
Figured we better wear these shirts before we out grow them. Micah is in 0-3 months and William is in Newborn, but both are about to move up to the next size (William up to 0-3 months and Micah up to 3-6 months.)
Tommy the Big Helper!
Tommy was a big helper today at the Nature Preserve. He held Micah for about a 1/4 of a mile on his lap.
Tommy Time
The other night Tommy and I spent some time having just Tommy and Mommy time. We painted. It was so much fun. Tommy painted naked because it was just easier to clean up that way. And when he was done he had painted "EVERYTHING" including you know what.
Here's what we did:
Here's some cleanup pictures. When we were done we threw everything in the tub, paint containers, brushes (ok the only brushes were the fingers).....etc.
Update on William
Wed to Friday last week William didn't gain any weight at all. He was steady at 8# 0.5oz, then on Monday he had gained 4 oz. 8# 4.5oz. We're watching his weight close, and will hopefully see gain again today.
Tuesday he had OT and ST, and did great. It wore him out, and he slept most of the evening, and night too. He didn't do so well eating, but did eat enough we think.
Today William and Micah helped me take Tommy to Arbor Hills Nature preserve. We had a good time, but were worn out at the end. I think I need a spare set of hands if we go back again.
Saturday, May 17, 2008
Missing Clyde
Friday we walked to a park near our house, One boy on my back, one in the stroller, and one walking with us holding Clyde our special teddy bear. (I'll give you one guess who was walking holding Clyde, and it wasn't William or Micah). At the park we played with another 2 year old boy that was there. Tommy and Cameron (I think) had a blast chasing each other down the slide, and walking around the park balancing on the blocks. Then he had to leave, so we left too, it was nap time anyway. We arrived home, dressed for nap time, and lay down in bed for some snuggle time, and then I went to tuck him in with all 3 teddy bear Clyde's (yes every teddy bear is Clyde), but these are the special ones we sleep with, but only 2 Clyde's were present, and I said to Tommy "We left little Clyde at the park!" He gave me a wide eyed look, but was still ready for nap time, so he lay down for his nap and I went to feed the boys, and call Grandma. I called Grandma, and informed her of the amber alert for the Teddy bear, and she rushed right over so Mommy could hunt down the missing Clyde. I walked to the park and look all over, he was no where to be found. Then walking home I remembered that he had gone up to one house, and then down their walk way, and I looked an on the front stoop there was Clyde!!! HE WAS FOUND!!! I was so exicted! Nothing make a mom's heart sink more that a missing special bear, and celebrate when it's found!
Grandma stuck around and watched Micah and William so I could take Tommy to the store and get some much needed Grocery shopping done! Yeh! I didn't have to do it at night after Rob returned home from work so I could use my night time for getting some much needed sleep!
Tuesday, May 13, 2008
OT and ST appt Tuesday
We are finding lots of things/aversions in his therapy related to the hospital stay, like the bottoms of his feet are sensitive because of all the heal sticks he had, and he has a strong oral aversion to gloves on hands. We are using other tools to work with him during the speech portions, and when it comes to using hand in the mouth for some of the treatment they've said if it's ok with me they can use a well scrubbed bare hand. I'm find with that, I just want him to get better and what ever it takes. I'm suppose to use the nuk brush at home on his lips and gums before feedings and then also massage his feet with lotion to put good feelings with touching the feet.
LLL Disaster
We attempted to go to a LLL Mtg today (tuesday) and it was a total disaster.
Tommy started crying for ba-ba as soon as we walked in the door....(nurse) I try to avoid that, but he gave me no choice, so then I was nursing Tommy and Micah, but what better place to do it....sigh...
then after I told Tommy he was done he got down and started clubbing kids over the head with toys. Then he had an accident and all I had to put over his bottom was a diaper cover, so I did that and he had another accident and stripped naked in front of everyone (about 15 moms). All I then had for him to wear was some underwear I had found at the bottom of my bag.
Oh and then he proceeds to scratch another mothers new baby on the face. She was very understanding as her son was going through some of the same things.
I just wanted to cry!!
Thank you Everyone
I went to the local ICAN meeting Monday night, and ran into several people that I didn't even know that were praying for my family, my marriage, and William of course. It's so wonderful to meet strangers and hear that they've been touched by Williams story and following it every day and praying for him, and wishing they could do more. We are so thankful for all the prayers, it is just amazing to sit her watching God perform Miracles through him. Even if all you can do is pray it just means so much to us. Please keep praying!
Explaining some things & 2 month checkup
I've been asked several of the abbreviations I've used and what those mean:
CP = Cerebral Palsy
ST = Speech Therapist (feeding issues)
ECI = Early Childhood Intervention provides therapy through school districts free birth through age 3.
How is William and what's the prognosis: He still resists eating and has trouble enjoying it. It's lots of work for him still. He eats the minimum, and is gaining the minimum needed (1/2 lb a week), but we would like to see him do better here. He also had trouble eating for different people at times. His official diagnosis for all the therapy and to qualify him for various support programs is CP. His muscle tone is Hyper-tonic (over tone) (too much tone in his muscles). He holds his arms stiff and his neck stiff at times, and twists it to the right. We've now had 3 chiro adjustments and it's helped his neck, but I do see we still have a ways to go. He will have chiro care 3 times a week for 4 weeks then we will re-scan him and access where his is. This is also highly recommended by his pediatrician. She recommends that all babies get chiropractic care. He is expected to be "all there" intellectually, but the physically is a question at this point. We won't know the extent of his injury for possibly several years. The best thing we can do is get him all the therapy we can.
William and Micah 2 Month Checkup
2 Month checkup for the babies was Monday. William was 7# 14 oz and Micah was 12# 7 oz. Micah was 75% height and weight, and William was closer to 10th. I'm sorry I forget all the height information from the appt, I'll have to call and update this post tomorrow. The main topic for the appointment was William, and what we are doing for him. She wanted me to take cards and pass them on to the chiropractor, and other therapists and have them all report to her how he's doing with each different treatment, so she can coordinate it all, and be the "ring leader". She was excited we were getting chiropractic care for William and even said that that's the best thing we can do for him at this point, and to keep up the good work.
Saturday, May 10, 2008
Pictures of the Boys!
BTW: I don't recommend pictures being taken at 8pm at night when the toddler's bed time is usually 7:30, it took tears and bribes and distractions to get these pictures, and my husband said don't take me with you next time.
William
Micah
Micah, Tommy, William
William, Micah
William, Tommy, Micah
If you can't see them in this email check out my blog.
--
Lydia ConradMommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
http://conradzone.blogspot.com
Wednesday, May 7, 2008
William myriad of doctors appts.
William's myriad of doctor's appointments:
Monday afternoon we had the followup discharge visit with the Pediatrician, she weighed him, and checked his refluxes and range of motion, and briefly discussed how CP is a matter of therapy, and that's what we need to do is get all the therapy we can. He weighted 7#8oz (up from 7#5oz on Friday) And 7#1oz on discharge from the NICU. She looked at him said he looks pretty good considering, and said we would check weight again at the 2 month appt in a week. She also said to feed him as often as he's hungry. Try for every 3 hours, and watch his signals. Also, she said to make follow up appointments with the neurologist for when then need to follow up on him, so I will call them tomorrow.
Tuesday afternoon we had an appointment with the OT (again the OT and ST people we are seeing are those that worked with the conjoined egyptian twins IPT), who took a history of the birth, and events related, and also a history of his NICU stay, and then worked with him using cranio-sacral therapy. After the appointment his head (the frontal bone of his skull looked much better. It had a bad overlap before, and she said that a lot of his brain looked compressed, and that the therapy would allow it to expand on it's own. Also she mentioned that the frontal bones are right over the motor cortex of the brain and that helping those expand would allow the motor skills to improve. Also she mentioned that she does no manipulation of the bones, and that the pressure/touch they use is lighter than that of a nickel. He squirmed a little for the appointment, but fell asleep by the end. She said she would suggest 6-8 weeks of treatment at this time, and then re-evaluate at that time. Also, she said he's some of the youngest patients she's treated, usually she get kids when they are 4-5 months old or older because then they are showing some obvious delays, so it's good we are treating him even younger.
Wednesday morning we went to the new chiropractor that we'll be seeing. He did a scan of Williams spine and it showed Red/severe disturbances at the very top of his spine and also at the bottom of his spine near his sacrum. He then adjusted him, a lot of the bones in his skull were out (almost all of them), and then adjusted his neck, and then is lower spine and sacrum. Previous to the chiro visit and part of the reason for the visit William had been holding his head to the right side all the time and when he was in pain or discomfort, and had been doing so for weeks. I knew he needed chiro care much before he was discharged due to this. After he adjusted the neck William immediately turned his head to the left and fell asleep. We will go back on Saturday for another adjustment, but now I'd say his neck is 80% better, and he's eating better after his adjustment. Several of his reflexes after the OT and Chiro treatments are looking much more normal.
Also, Wednesday the home health nurse came by and checked on William. Did his vitals and weighted him. He was 7# 10oz up from 7#8oz on Monday. She will check on him again on Friday.
PS the underlined words at the top are links to more information.
Our look ahead (PS any help with tommy for appointments would be appreciated.):
Saturday: 9am Chiro appoinment for William (Rob is home to watch Tommy)
Monday: 8am Pediatrician again for twins 2 month checkup
Tuesday: 1pm William OT and ST appointment (Rob is home to watch Tommy)
Will have a standing appointment on Tuesdays for OT and ST probably around 2 or 3pm.
Monday, May 5, 2008
Story on the Picture below.
Tommy really needed to go down for his nap early today as he needed to go to a friends house at about 2 so I could go to Williams doctor's appointment today without him as I didn't want to play chase the toddler around the office again, or stop him from turning off and on the light 50 million times. So I tried to get him to nap early. (Oh and while trying to get him to nap early the attic people were adding insulation and radient barrier to our attic and making lots of noise in the attic and with a "big truck" out back. He had to get up twice to use the bathroom, one of those times the diaper didn't get put back on. He tried to escape outside while I was dealing with the twins twice (BTW he can now open doors including the door to the garage, and the insulation people chased him back inside at least twice). Then I think he got locked in his room in timeout with no pants on while I did one more thing and he finally was quite and passed out. This is where I found him when I was packing his bag to leave.
Friday, May 2, 2008
I love this photo
Despite it not being in focus....
You can find more photos here: http://www.flickr.com/photos/conradzone/
It's so good to have all my boys!
Me at the top,William, Tommy and Micah.
Our first full day was wonderful, and just a taste of what it's like to have 3 boys. We spent most of the day at home, and I finally got a shower around 3pm when my mom stopped by.
William and Micah were both up to feed at 5am. I fed them and just as I was about to drift off to sleep again, Tommy wakes up at 7am. So he gets up and we lay on the couch together snuggling and he watches tv from my arms so I can catch a few more z's, but with the assurance he won't "hold the baby" while I sleep. Then it was 9am and Tommy had some chicken while I fed the boys again. The boys slept in the bassinet together while I tried to get tommy in for a shower, when I realized the Home heath nurse had just pulled up out front to check on William. (We have a home health nurse checking on him 3 times a week for 6 weeks or what of that insurance will give us.) So much for our shower, Tommy starts crying while she's here and gets sent to his room for the 5th time out (at least), and passes out on the floor infront of the door before I have a chance to get him again. I meet with the nurse, and she checks out William, he's great, and 7# 5oz in a diaper, (she also weighs Micah and he's 11# 12oz also in a diaper). We fill out paperwork and after she leaves I eat lunch and attempt to take a nap after feeding the boys at 1pm, and just as I'm about to drift off my phone rings, my mom wants to see the boys, so she stops by and visits and takes a few pictures for us, Tommy wakes up from his nap (dry I might add). Good boy Tommy, I shower, and we head out the door to the park. (about 3 hours after I wanted to leave.) Oh and as I'm putting the boys in a wrap to carry them out to the car One of them poops so I have to stop and check diapers again and change the 30th diaper of the day. Finally we can go, my mom helps me load everyone up, and we go to the park. At the park I realize I've got cold milk, and no way to warm it. We end up using body heat to warm the milk. (DID I MENTION I HATE BOTTLES) At the park Tommy runs around everywhere and has a GREAT time! As were getting ready to leave both boys want to eat, so I feed William the bottle that was warmed with body heat, and then after he's mostly done I feed Micah, then we pack up to go, after 3 more diaper changes at the park.
We get home from the park, and all 3 babies decide they are starving (again for the little boys), and for the first time for the 2 year old, the neighbor lady comes by to see William, and cuts up Tommy's chicken (From the wonderful meal brought to us by a friend from MOMS Club) for him while she's there, and while I'm giving William a bottle and nursing Micah. Then Rob gets home and we play swap the baby while he holds one I try to get the other one happy that's not happy at the time, because you know it's evening grumpy time for them. Then Rob heads to bed I finish comforting the boys and put them in bed, straighten the house, post to my blog and head to bed right about time for another bottle.
Thursday, May 1, 2008
William is HOME!!!!
William is home from the hospital, we walked in the door a little after 3pm today. You can find pictures on my blog: http://conradzone.blogspot.com
Thanks so much for the prayers, and please continue to pray for William's recovery, he has a long road ahead, with lots of therapy. He's got some shaking in his eyes still and is super sensitive to motion. We're still bottle feeding him fortified breastmilk, and hope to try breastfeeding soon.
--
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com
Lydia Conrad
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
Lydia@conradzone.com
214-226-3206 cel
http://conradzone.blogspot.com
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