Tuesday, December 23, 2008
Doula Certification
Monday, December 22, 2008
Seeking Sitters Response
I am very happy with their response, and because of this would refer them to my friends to use. But I woulds still suggest blocking this sitter from your preferences. I'm very glad their system allows you to block sitters you don't like so they will never be asked to come back again if you had a bad experience with them.
Also, Jennifer gave me her cel phone and told me I could call her and see who's available before placing a request.
Saturday, December 20, 2008
William Weight Check
Wednesday, December 17, 2008
Please Pray for baby Lia
Tuesday, December 16, 2008
Sitter Problem of December 4th
Dear Jennifer,
I've thought repeatedly of/over the course of events that occurred on December 4th, and I'm dissatisfied with the response that I've received from both you and your sitter, and the agency as a whole in an attempt to resolve this issue that occurred with the sitter being uncomfortable in my home.
Here's what happened again that evening. I requested a sitter between about 4:30 and 5 for 5:30 that evening, the agency called me back about 5:15 to confirm the details and said they had someone in mind, and just needed to make a few calls and was it ok if they didn't come till a little later, and then called back to say they had someone that could be there about 6:15 and she was coming from Arapaho and Preston. The sitter called at 5:45 and asked for directions. I gave her directions and she arrived between 6:15 and 6:30. I told her who needed a bottle, and gave her pjs and diapers. She got the twins names confused several times, I showed her my filled out seeking sitter book, showed her where the babies sleep, and told her how to put them down. We returned to the living room, and she proceeded to get the babies dressed for bed, and we left as we were running late. We drove down to downtown Dallas, and had just pulled into the parking lot, paid for parking, when my phone rang. It was the sitter, and I figured she had a question about bed time, since we had to leave quickly, and I told her to call if she had any questions. I answer and she tells me she's uncomfortable with the environment and we need to come home and she's spoken to Jennifer about it. I ask her what she's uncomfortable with, and she says she's not comfortable saying, but that William had fallen asleep, and didn't eat, I asked her if it was because he didn't eat and told her that was ok because he just had a bottle before we left. She restated that she was uncomfortable, and something about putting Micah in the master bed. I couldn't understand why she couldn't just say what was wrong so we could find another solution, but I assumed the worst and called my mom since she lives only 5 min away so she could rush right over. I called the sitter back and left her a message that my mom was coming over so she didn't have to spend one more min there if she was uncomfortable, and that she could check her id and compare it to what was listed in my seeking sitter book, and she called me back and said that she'd checked with the agency and that was ok if my mom came over. My mom arrived 5 min before we were able to make it home as traffic wasn't as bad as I imagined it could be, she said the sitter ran out the door after she arrived said something about putting a baby that can crawl in the master bed to her, and my mom said she seemed overwhelmed. Also, when my mom had arrived Tommy had wet his pants. When we arrived home my mom had just changed him, and was getting him ready for bed. She told us what she had done, and had to leave to return back to get her work done. I also called the agency on my way home and they told me they didn't know what was happening, and that someone would call me tomorrow. When Jen spoke to me the next day she stated she wouldn't charge me for Miranda's time she was there, and never gave me an explanation why the sitter had to leave, but also something about Miranda being uncomfortable with the fish tanks, another inconsistency in the story.
You asked me if I as a former sitter myself was ever uncomfortable in my environment, and nothing short of Sexual Harassment would have caused me to be discontented in my environment where I needed to break a commitment of my word and leave the situation immediately.
Also, you had stated that Miranda is an independent contractor for your agency and free to choose to leave if she deems the situation inhospitable. Miranda also told me that she had informed you and discussed with you that she was uncomfortable and needed to leave and that it was ok with you. It really makes me nervous with using your agency that you want to just keep this between us when a sitter you only contract with has broken her word and failed to complete a sitting commitment that was arranged, and that she was given permission to leave, and that you intend to use her again as a sitter for other families where she can do the same.
What if the event we had to go to was more important, or farther away and we could not get back home, or our contact number failed to work? How do I know that your agency has dependable sitters when you continue to contract with this sitter who has proved undependable in this situation? How do I know other sitters haven't done the same? Also, I find it rather unacceptable that you agreed to only not charge me for her time there, she never presented a time card for me to sign, and as such would appear to be more of a no-show sitting. I would expect any sitters that weren't comfortable to express that before the parents leave, so we could have made arrangements to take the children with us to the event, or leave them with someone else. As the situation occurred we were left with a $10 dollar parking charge that wasn't used, and $150 tickets that weren't used, and my mothers time in leaving *her work* to relieve the sitter. Nothing was done to compensate us for our financial loss due to the sitters inadequacies, or make the situation right, other than not charging me for an event you couldn't charge me for anyway. In fact i was asked to keep the "personality conflict" between myself and the agency, something I'm not at ease with doing when the agency still chooses to user her as one of their sitters. My other friends have similar parenting styles as me, and I'm not cozy with referring them to an agency, that cost me so much money and sent an incompetent sitter to my house who was not equipped to handle any situation.
I will add that I appreciate the agencies also offer to setup at list of preferred sitters for me that they would recommend for my family in the future, but this consisted of only 6 or 7 sitters, and I'm afraid that because my preferred list is so short that one of those won't be available, and that I may end up with another mystery sitter or no-one when I need someone, and may be facing the same issues we had before, or that the agency will serve to defend their sitter again instead of support their client as happened with the December 4th incident.
Also, if the agency still chooses to contract with Miranda, or other sitters that have had problems, is she/they being limited to older kids or only 2 kids instead of 3 or more, or situations like churches with supervision, or something else to prevent a similar situation; for me to feel satisfied with the resolution of this problem so I can continue using seeking sitters again for my sitting needs I need more explanation of steps that are being taken on the agencies side to prevent a mismatch like this in the future.
Also, should the agency do a questionnaire for the sitters and families about personal political beliefs that may cause a sitter to be uncomfortable an unable to preform their job in a families home? Pets, allergies, sexual orientation beliefs, nontraditional parenting style, hunting, animal rights, gun ownership, religious preferences etc. Due to the sensitives of these questions I'm not even sure you can ask them, but I wouldn't want a sitter coming to my house where my fish or dog will make her unable to care for my children, or I could lock up the dog or cover the fish tanks before a sitter's arrival.
Thanks for taking the time to address my concerns, and I look forward to your resolution to this problem so I may continue to use SeekingSitters for my babysitting needs in the future.
-Lydia Conrad
Monday, December 15, 2008
Saturday, December 13, 2008
Thursday, December 11, 2008
Seeking Sitter's response:
Thursday, December 4, 2008
Bad Experience with SeekingSitters Agency
Our sitter was: Miranda C.
Sitter called 30 min after we had left to say she was "uncomfortable with the environment" and that we needed to come home right away. Ruined the whole evening. No explanation, and apparently she'd been talking with the owner, but I couldn't talk to her till the morning. Cost us $150 in tickets. If she could have told us the reason we could have found something that works. Very bad communication skills with both Seeking Sitters, and the sitter. Also, I would suggest Seeking sitter's educate their sitter's on safe co-sleeping, so a sitter knows what surfaces are safe for a baby to sleep other than a crib. I called my mom to come over right away, and my mom dropped everything and was there in 10 min, my potty trained toddler had peed his pants because of the stress she put him through, and she quickly ran out the door, 2 min before we got home.
We'll see what they have to say tomorrow when they call me back.
Monday, December 1, 2008
Quick Update on Micah
Saturday night I noticed Micah got his first tooth! Bottom left.
He's also been saying a few sentences:
All done.
Hi there.
I want Ba-Ba.
I want dink.
The "Hi, there." copied my mom saying it several times, so I'm positive we're not hearing things, and he's repeated it for several people, and everybody clearly understood.
His other words include:
Daddy,
Momma,
Hunter,
More,
Ba-Ba,
He gestured that someone hit him yesterday when the sitter was asking her own child if she had just hit Micah, he was telling her yes she had.
He is very vocal, and if you aren't right or he wants mama its the end of the world, especially if he knows I'm around and accessible.
Oh and Micah and Tommy have really started to play together, they will do things to make each other laugh, and Micah tries to follow and do everything that Tommy does, including climb slides, bounce in bounce houses, jump and dance.
Quick Update on William
Chicken, green beans, sweat potatoes, olive oil
Banana, apple, carrots, and olive oil
Turkey, sweet potato, zucchini, carrots and celery, and safflower oil
Chicken, zucchini, carrots, celery and spinach and safflower oil
Avocado
Any thinning is done with milk or oil to keep the calorie content up
Today he ate:
7 oz with the sitter and 1 triangle of turkey mix (about 1.5 oz each)
8oz @ 3pm
2 triangles of 1 chicken, 1 avocado mixed
2 triangles of chicken avocado mixed
9oz of milk @6pm
5oz @ 7pm
Boy was his tummy full!
Also, he's loving his new chair (the bucket)! Sitting vertical can help with digestion, and motility of his gut, bone growth, strength, all things kids with CP can have problems with, as the brain damage can effect all muscles even the muscles of the gut.
Sunday, November 30, 2008
Thursday, November 27, 2008
Thankful!
I'm so thankful for our health. The prayers and support and help we've had over the past year with the birth of the twins. I'm so thankful for each of my boys, Tommy's exploration and independence, Micah's easy going understanding personality, William's continued improvement with his therapy, and view into God's miracles, I'm so thankful that he's alive and here with us, and for everything he has taught us all.
For all the friends that have helped us and supported us over this past year, and continue to do so. Especially Courtney in how she cares for the boys while I have to work, and Lori who's been helping us with Tommy when William has therapy, my MOMs Club who helped when William was in the hospital and provided meals after the boys were born. For our church and what I'm learning there. My mom who often comes running to keep my sanity at a moment's notice. For Rob's parents who often keep Tommy entertained during various therapy appointments, and Rob's dad's retirement that has enabled him to do so.
And of course number one Jesus our savior and redeamer and friend.
Tuesday, November 25, 2008
Finding seats that work
Here's what we came up with working with ECI PT to fine ways for william to sit in a seat. He currently will tip over to all sides if left for too long, or will arch out of hard backed chairs. This seat supports all sides, and also limits some over stimulation, and allows him to have some upright time which helps digestion, bone growth and other things.
Tuesday, November 11, 2008
Organic Food Co-op
Here's what we got for 2 weeks of produce:
Basic Share $50
Beans, Green approx. 1 lbBroccoli 1
Carrots 2 lbs
Celery 1
Lettuce, Red Leaf 2
Peppers, Sweet Mixed 1 pint
Squash, Zucchini approx. 1.50-2 lbs
Squash, Hard, Butternut 1
Tomatoes, Roma (Plum) approx. 1 lb
Yams, Medium Garnet or Jewel approx. 3 lbs
Apples, Gala 7-8
Avocados, Hass 2
Banana, Green 3.5-4 lbs
Oranges, Valencia 8
Pears, Bartlett 6
Sunday, November 9, 2008
Friday, November 7, 2008
Adventures in Food
William is a bit more of a challenge to me, I'm not really sure how to do it since I've never fed a baby "baby food". So far I've offered him peas by holding them to his mouth and he eats them just fine, but can't quite get the food to his own mouth due to his troubles. So since he's interested in food, I needed to find some way to feed him. Micah was having Bananas and chicken tonight for dinner, so I took a piece of banana and chopped it with the pampered chef chopper, and did the same with some chicken, I offered them seperately, and got quickly tired of that, so I mixed them together, and added a little oil (for calories), and some applesauce since I was serving apple sauce to Tommy, and fed him with a spoon, just putting it near his mouth careful to not insert the spoon too far, and he ate the whole thing and then drank 2-3 oz of mommy milk!
Photography
http://www.kingdomblessed.com/
Wednesday, November 5, 2008
Halloween
Tommy was Thomas the Train for Halloween due to his obsession with trains recently, and he seems to be moving as fast as trains most of the time, so this in one of the only shots we got Halloween, I realized this as we were going to bed so I took a few more, they weren't much better either.
Tuesday, November 4, 2008
Halloween and greeness for all!
On Halloween, we took the kids trick - or - treating to a few houses, and the the babies stayed home with my friend Kati since Micah was sick, and took Tommy up to church to play in the bounce house, and eat all they candy he so desired.
Monday, November 3, 2008
Friday, October 31, 2008
Saturday, October 25, 2008
ER Visit today for William
Monday, October 20, 2008
Saturday, October 11, 2008
Wednesday, October 8, 2008
MRI
The Fair
Wednesday, October 1, 2008
Monday, September 29, 2008
Nystagmus
Nystagmus <- the link doesn't tell you a whole lot does it? :)
I didn't either, till I was told the word during an evaluation we went to for a new "school" mommy and me class for kids like William.
It started (or I noticed it Yesterday, and today Courtney noticed it too.) Told Rob about it and he said, "Oh yeah, I've seen that."
It looks rather freaky, and almost like it could be seizure like, but it doesn't look like a seizure at all. His eye *shakes* as he tries to focus on an object.
Paged the neurologist after I was given the "word" for it, the on-call neurologist called back and said we likely need to be seen since it's new, but that it's likely a result of his injury, and it can be caused by medication, but not any that he is on, so we don't need to do anything right away, but he will let our doctor know and they will call us to setup an appointment to take a look.
All in all you had one freaking out mother on your hand, so I called my be all end all medical reference, ok the local radiologist in the family ;) (Love you Jason! **Really I do**) He was nice explaining to me how some adults don't even realize they have this, and that it's just evidince of his injury show up now that his eyes are beginning to work, and their may be other things like this in the first few years as we really see the brain starting to work. He didn't know how it specifically affected a pediatric case, but it was really nice to have his reassurance that my kids at least not going to be blind, and that this could be completely normal for William.
Saturday, September 27, 2008
Brother Love!
Friday, September 26, 2008
And you thought I was busy before!
Sunday, September 21, 2008
Friday, September 19, 2008
Micah Sitting!
Look ma all by myself! Micah sat today for the first time all by himself! He went from on his tummy to sitting all by himself! It was when we were at the balloon festival and sitting on a blanket, all of the sudden I look over and Micah is in a full sit!
William in the BUMPO!!!
William just started in the bumpo yesterday, and today he even did better!! Later tonight he even sat unsupported for several seconds!!! (Right by me of course
Thursday, September 18, 2008
Micah Trying to Sit
Wednesday, September 17, 2008
Just a teaser....
Micah almost sitting
William for the past 3 weeks so you(I) can see progress
and William I'm recording video every week so I can see progress, because it's hard to tell when your around him all the time.
Sunday, September 14, 2008
New Routine
Sunday, September 7, 2008
William drank a record 38 oz yesterday....
Friday, September 5, 2008
Thursday, September 4, 2008
ALL GREAT NEWS!
1. William's eye is all better!
2. William's weight is right on track (we do have to write down what he eats so we offer that last feeding if he needs it).
3. She's working on the referral we asked her for to Scottish rite!!!
4. She gave us the prescription we needed for a breastpump (we had to rent a hopsital grade to maintain proper supply).
Other stuff:
5. PTs say he looks better
6. We've gone down a little on his med dose
7. My mom's been great help and great company
8. I started work and the sitters and kids did great for the first week
9. Micah is up on all 4s going backwards
10. Had a great labor day with the family.
11. ECI PT we got is GREAT she really explains things well, and can come every week!!!
12. It was great to see my Dad over the long weekend.
I think that's all ...I've got some pictures of bath time and this past weekend and plan to download those from the camera soon so keep checking back.
Thursday, August 28, 2008
Lots of stuff happening this week.
Wednesday we had therapy PT from 11-12, and that went great, lots of stretching and getting the eyes to move to the left. Then that same afternoon we had OT with ECI at the house, and that went fine also, some more of the same.
Then Thursday am when I gave him the 5am dose of medicine he was in the fetal position (normally legs are straight and hands are out), so that's a HUGE improvement, and one hand was also up by his mouth. He's never really figured out how to bring his hands to mid line, much less to his mouth, so again that's a wonderful improvement too! Thursday 11am we had our CST session, with Sally Fryer (PT that worked with the conjoined Egyptian twins), and during the session we were playing with Micah and Micah was giving William kisses on the cheek, and Micah was smiling about it and William was smiling about it, until one of the times we went to give kisses, Micah's arm flew up and he put his hand on Williams cheek instead, only his fingernail went in William's eye (William's reflexes are slower due to his injury), and William cried this soft cry and kept his eyes closed for a while, and when he did open them finally something just didn't look right to me, so when we finished our session I called an optometrist, and they said with the situation and him being so young we should go to
Children's or our Pediatrician, well the Pediatrician had just gone to lunch and we couldn't get a hold of them, so we headed down to Children's, there was no line, so we checked in, and saw a doctor within about an hour. The resident didn't see anything, so she left and came back with the attending, she brought a dye, and light to look at his eye, sure enough he did scratch the eye ball, and we needed to put ointment on for 5 days and follow back up with our pedi in a week. The pediatrician finally returned our message as we were leaving the hospital, so we scheduled the follow-up appointment. And headed home. Then we called the LC to check on getting some parts for pumping at work since I start back to work on Sept 2nd. This way I can keep a pump parts at work and a set at home, and can never forget them this way. She had them, so we drove to her house to pick them up, and then back home again and stopped at Tom Thumb where we ran in to Grandma to fill our prescription for the eye ointment.
Wednesday, August 27, 2008
Tuesday, August 26, 2008
It is with saddness that I report...
Apparently Maintence was fixing something in the appartment, and let her out of the crate and she darted into traffic and was instantly killed.
They called me because she was micro-chipped.
Monday, August 25, 2008
Happenings...Life...Thoughts....
I called Scottish Rite, and they said he needed a orthepedic problem to be a candidate, and he has the problems with torticallis, so I put a call in to our pedi to get a referral, and haven't heard back. At first she said we needed to talk to the physical therapists, and chiropractors about that, but we're already doing that. So maybe.... I am still thinking it wouldn't be a bad idea to see a neurologist with more experience with CP cases, even if it doesn't end up being at Scottish Rite.
At our PT session last time they suggested I call an upholstery place to make a crash pad (where they put the foam blocks in a duve), for help propping him up in the posisitons he needs to be etc. So I called one today and they said they'd be happy to help and had tons of scraps. So we may "swing" by down town off industrial to pick up foam pieces, for our crash pad.
Williams still eating average over 30 oz a day. I've got a call in to the LC to see where he should be (oz per day).
Micah is still scooting, it appears he can now go both forward or back, but doesn't have much control over which way, he's still coordinating that, but he is always trying to MOVE. He's also got quite the since of humor. He finds sneezes laughable, and loves making faces (usually smiling) at anyone who will listen or pay attention.
Our day today consisted of a play date with the local MOMs Club at 10am followed by a quick trip to the store for this weeks groceries, (I'm still doing a meal plan for the week and I'm going on 6 home cooked (weekday) meals in a row. Might I add the trip to the store was with 2 babies and a toddler, we got most of what we needed, but William screemed at me the whole time because I was a bad mommy and forgot his milk at home, and it was time for his next dose too.
Then we went home unloaded groceries, feed 2 babies, put everybody down for naps, put the groceries away, gave william his meds, (not necessarily in that order), made lunch, fed everybody lunch, handled a time out and a tantrum, then there was peace till about 4 when babies and toddlers started to wake up while I was in the middle of preparing dinner. Yes we praise God for 3 hour naps around here still!
Then we had floor time and bottles, and snacks while we waited for Daddy to get home so we could eat our dinner. After dinner we had some play time and quickly headed to bed. I nursed the baby, fed the other one a bottle, and then layed down with the toddler for a few minutes.
Wednesday, August 20, 2008
Tuesday, August 19, 2008
New Therapies for William
We've started some PT for William and added some OT and PT from ECI as well. Much more time and energy to devote to helping him get better, yes BETTER.
I've learned that the chance for recovery is greatest in the first 6 months (we're at 5 months now) and continues to be high in the first 18 months, after that the injury will not improve much, but won't get worse either. I've asked a great deal of questions and met with several new people, and they all think William WILL LEARN TO WALK!!!!, but part of the key is to get his as much therapy as we can....NOW, and also working with him as much as we can.
We've been shown new exercises, and were trying to do them as much as we can, I've got some photos on my phone to explain, and I'm hoping to make a big chart for the wall to put photos and explanation in to remind us of exercises to do.
I've also been given some ideas of some other therapies to check into, HBOT, and also check into getting him services from Texas Scottish Rite Hospital, according to their web site he appears to qualify, so I will call them tomorrow to check on it. There neurologists see more kids with Cerebral Palsy, where as the neurologist he sees already sees more kids with epilepsy. Maybe there's another medication that's better or that can lower his Valium dose. Or the possibility of better therapies etc.
William's Beautiful Smile
Notice also that the head is mostly midline, and hands are too. We are working on these in therapy, and can hold for a few seconds, but it's lots of work and we just worked on them before this photo.
Wednesday, August 13, 2008
Micah's seat
like what am I suppose to do with those. Micah really goes to town in
this seat, playing with every toy and making the cow sing.
It's been a while since I posted pictures
Tuesday, August 12, 2008
Tommy's Prayers
Monday, August 11, 2008
Sadie has found a new home
than we could give her. We just couldn't handle 2 dogs and 2 babies.
So they had become outside dogs, now hunter can be back in the house.
As the two of them would go crazy together. They are both much calmer
dogs apart.
Happy 5 months boys!
Party and Today & ECI Visit
ECI Came over today for William's first OT session with them. She came out and said he's much better with the medication now, and showed me a few positioning things with him. She said to position him on his side where he'll be looking at the ground if he turns to the right, and that way he can bring his hands together and cross mid line and look at some toys. Also when he sleeps as much as possible position him with his head on the other side so to prevent the flat spot he's getting as much as possible. She will be back weekly on Wed and will make sure to get PT involved asap, and I"m to call her on wed if I haven't heard from PT.
Sunday, August 10, 2008
Happy Birthday Ryan
Friday, August 8, 2008
William's eating & diaper log
6 @ 4
3 @ 9
5 @ 12
5 @ 3
8 @ 6
2 @ 8
4 @ 10
Wet at 4
Poopy @ 4:3
Wet @ 5
Wet @ 8:45
Wet @ 9:15
Wet @ 12
Wet & poopy @ 1
Wet @ 2
Wet @ 3
Pee @ 3:15
Wet @ 3:40
Wet @ 6
Wet @ 7:30
Wet @ 8
Wet @ 10
Wet @ 10:30
Lydia Conrad
Mommy to Tommy (2 3/06), William & Micah (3/08)
Lydia@conradzone.com
Http://conradzone.blogspot.com
Thursday, August 7, 2008
Wednesday, August 6, 2008
The Dryer Ate a Sock
Tuesday, August 5, 2008
Grrrr
PS: I'm about to post some videos!
Monday, August 4, 2008
Weight Check
Everybody is doing great
Micah is scooting all around, he rolls quite well in both directions, and now prefers sleeping on his tummy. He loudly lets you know if he has a dirty diaper, is tired, or needs a bottle, other than that he's happy go lucky go anywhere baby.
William is looking much bigger, so we're going for a weight check this afternoon at the pedi's. He's eating better, and not as stiff, we've played around with his dose a little bit (up to .7, and back down to .6 3x a day.) We're also practicing several times a day supporting our head (every chance be get), and also positioning him where he is turned to the left (since his preference is the right). Also he tends to look his eyes to the right, so we try to draw them to the left as much as possible, either with positioning, or by looking at him and getting him to follow us to the left. I'll post a weight update after I know, but when I tried on the scale at home he was 12#, we'll see how accurate that is, because that would be a gain of 1.5# in 2 weeks.
Also, friday night we tried Seeking Sitter's agency, and the sitter they sent was great. Rob and I had a date night, and went out for dinner and then walking around shopping for a little bit. We had a good time, and called it an early night at 9pm. man we're getting old.
Saturday, August 2, 2008
Friday, August 1, 2008
Airport
I've really been missing my Grandmother as of late, her 4th child was born with Downs, and had a stroke, and paralysis on one side of her body, and I just wish I could talk to her more about it.
Wednesday, July 30, 2008
Today
He was stiffer this evening, but I'm not sure it was from wet diaper, hunger, or spitting out part of the valium at the 4pm dose.
After therapy and chiropractic, we took my mom to the airport. Tommy was sad to leave Grandma at the airport, so we called her on the way home and he was feeling better about that. I think on things like people leaving he's not realizing they are leaving till right when/after they do. This has happened a few times now. We call them, he says bye and all is good.
Monday, July 28, 2008
Digging through some old photos
This photo was taken the 27th of December 1947 in Savanna, GA.
Bride: Sydney Ellis Shipley
Groom: William Jason Shipley
Bridesmaids: Emily Ellis Groover, Frances Ellis Lewis (Sisters of the bride)
Groomsmen: Charles Groover, Best friend of the Groom, and Gilbert Bunny Lewis also a good friend of the Groom.
Flower Girl (Age about 4): Beth Groover daughter of Charles and Emily.
Sunday, July 27, 2008
Meds for William
8 hrs after William's first dose of medicine, he was completely tight again (I took pictures so we can see), so i called the doctor since he had said to start at .5 ml once a day, for a couple of weeks at first. The on call doctor called back and we talked about it and he said to do .5 ml now since he was tight again and then try to do it either every 8 hrs or twice a day. So Saturday we did 7am and 7pm after the day before he had 2pm and 9pm, Rob and I decided he was still to tight Saturday, so we will do .5 ml at 7am, 3pm, and 11pm on Sunday. He's defiantly been much more comfortable.
Thursday, July 24, 2008
Neurologist Appt
I told him he has much higher tone that last few weeks. The peditrician agreed that he's in pain and uncomfortable, and so did his therapist. We are moving him to twice a week therapy for OT, and also adding once a week PT. He hardly naps (only 30 min cat naps at a time because of the pain), wakes up grumpy. He cries alot. Struggles with his bottles every day. He's barely maintaining his growth curve, and the peditrician and therapist thought some medication would help him gain weight. He's always uncomfortable, he has trouble eating and gets lots of bubbles, had trouble burping. He arches at times and it looks like he will touch his toes to his head. He sleeps at night pretty well, because of the no sleep during the day. We hardly see any smiles, when he tries to hold the bottle he ends up pushing it away, and same thing with playing with toys. He watched me feed him a bottle which he did pretty good about.
After he finished and he woke up a bit, he examined him, and after he picked him up with his arms he still held his arms by his chest as he was supporting all his weight. After one look he said I think we do need some medication. He also check some reflexes. And then told me about the medication, it will make him sleepy, but that effect seems to wear off after time, but we don't want him sleeping too much, we will start with a low dose, but will up it over time as needed by his tone, there's no one correct dose for everyone, it's whatever corrects the problem without too many side effects. We will start out with a dose of .5 ml once a day and then increase as needed. The prescription will be for 1 ml 3 x a day, but we don't want to give that much right away.
We took the prescription to the pharmacy and they had to order the medication in a liquid form as they usually don't carry it in liquid form. The medication is Diazepam ie valium. We should have it tomorrow.
Many of my friends ask how I am doing: I was both relieved that we could get the medication because I knew he needed it and I don't want him to be in pain anymore, and that it would help, but at the same time I wanted to cry because my perfect baby needed medication to make his life comfortable.
Wednesday, July 23, 2008
Neurologist
Tuesday, July 22, 2008
4 Month Well Check
7/22/2008
10lbs 9.5 oz 0.18 %
23in 0.78%
HC: 15.5 in 1%
We need to get his as much therapy as we can, (we discussed today also getting therapy CST 2 times a week now), and we will also be getting PT through ECI, and maybe OT also. Also, we well keep feeding him bottles and talk about feeding tube again if he can't do solids (after 6 months) or falls off the growth charts, right now he's holding parallel below. His muscle tone is worse and she agreed, and that we need to see the neurologist and get on a medicine for this as this may also help him gain weight and not use so many calories holding muscles so stiff. I've already put a call in the the neurologist nurse to get in, and she called back while I was at this appointment. So I will call again in the am.
Micah:
7/22/2008
15lbs 12.5oz 85%
25.5in 84%
HC: 16.5 in 69%
Micah has a slight cold today and he's doing fine talking using his tongue, saying 'Hi' and 'Mama', just needs to rest and get better.
New Book
Have you read this book?
Share your favorite experiences?
I really like "toys are not for throwing", "people aren't for hitting" (explaining the problem) skill, because as a two year old it's hard to know that so many things he doesn't realize how things are suppose to work or why, and we don't realize that as adults.
Of course at bed time we were talking and I forget exactly how it came up, but hitting was brought up I think because he remembered a time he hit Micah today, and I said something about people aren't for hitting, and he translated it into Tommy getting a spanking, and I told him again people aren't for hitting.
Blueberries
I do, and it's not fun. Carpet cleaners need to come today, and I've already called them.
Monday, July 21, 2008
Today after the day
Tommy seems much better, I'm feeling better too, and William's still not sick!
Today
Saturday, July 19, 2008
Mother of a "Special" Child
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all
I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough
The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you
This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak
So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry
To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday
But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good
But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too
A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.
God Choose a mother for a "Special" child
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjotie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But she has patience?" asked the angel.
"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
And what about her Patron saint? asked the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."