HUGS!

In preparation for Crew's IEP, I have been thinking a lot about where he is developmentally. It's frustrating because it seems that he has regressed a bit in his communication.

Part of the problem is that we always know what he wants and we give it to him without really expecting him to request it appropriately. I've been more aware of this recently and have been spending more time prompting him to sign or verbalize.

Other than speaking "mom" 100's of times a day and "dad", I would say Crew's most often used word is "HUGS". He uses it in the plural form which is so cute. It's not set in stone but it looks like the school district is going to start using augmentative communication with Crew. I've held off with this for a while because I didn't feel like he was ready. However, the past month has been really hard. Crew has been very irritable. I don't know if he is hurting or just frustrated. I'm hoping that developmentally he is ready for this new communication method. My thought is that he will likely take one look at the communication board and throw it on the floor. Let's hope for more! *sigh*

Crew man is growing!

We came home from Shriner tonight with a new pair of DAFO's. This is the first time that we have used Shriners for his orthotics. I am pleased because they included a new pair of shoes (far right).

I pulled out is older braces and noticed how much bigger Crew is getting.

This month has been crazy. Here's how the month of January pans out:
4 visits from the PT, 2 from OT, 1 with Speech Therapy, 1 from our Hearing consultant, 2 appointments with the Audiologist, 2 X with the ENT, 1 appointment at PCMC with our Opthalmologist, 1 with Dr. Rehab, 2 trips to Shriners, 3 Blood draws from the lab, 4 phone calls to/from the Neurologist, 6 visits to the Pharmacy (what a joke!), 6 days of Preschool, 2 visits with Crew's future Preschool teacher, and one upcoming IEP.

On top of that: 3 Basketball games for Stockton, 2 Spelling Bees, 1 Dr. visit for Myself, 4 nights of Cub Scouts (I'm the leader), 1 Birthday party and 2 dates with DH(that's the fun part).

I never thought my life would be like this but I feel like the more therapy and intervention we get for Crew early on the more progress he will make. I've recently seen improvement in Crew's core strength. This is really exciting because I feel like as he improves his trunk strength we will see improvement in his walking and transitioning. Yeah! 

Ears update

We had our followup with the Audiologist and the tympanogram showed even more pressure in both ears. We immediately buzzed Crew over to the ENT where he looked in his ears with the microscope. He said that the eardrum is retracted and there is a little bit of fluid in there but they are not infected.

I'm really concerned about the fluid/pressure but at least we know that there isn't an infection. We are going to followup in 9 days. I had him look at his tonsils too and he said that they are enlarged but not enough to worry about it.

Dr. Wood also looked at his teeth and confirmed that he is trying to cut 3 molars. This has been dragging on for months. Over all Crew has been very happy and his appetite is more voracious than ever. He is good about showing his approval after each bite by saying "Mmmmmm" with enthusiasm. Crew is a great example of one who enjoys the little things in life. On our way home we stopped at our college days favorite icecream shop and ordered a shake to share. Mmmmm!

Jealous or not?

S was upset tonight because he says that his classmates make fun of him because he likes math. S is in 4th grade and the teacher posts all the kids scores on a bulletin board with the high score at the top. Well, you guessed it. S is at the top! I'm so proud of him but he doesn't like being teased. S is very sensitive so I don't know what to think of it. My guess is that they other kids are probably just jealous.

Maybe its not cool to be smart in Elementary School. I don't know.

Twins

My good friend, Kristen, delivered healthy baby boys last Thursday. I am so excited! They are a family of SEVEN now! Cool! I've been holding my breath for the past 5 months because she has had some complications. The babies are well and so is the mom. Aren't they cute!


Baby A: wt: 5lb 10oz, time: 9:53 AM on January 11th, 18 inches
Baby B: wt: 6lbs 5 oz, time: 9:56 AM on January 11th, 18 inches.

Dr. Rehab... Followup

Every 4 - 6 months I take Crew to see Dr. Rehab. She is an excellent Dr. , very knowledgeable and positive. Dr. Rehab was impressed with the improvement the Crew has made over the past 5 months.

Since we saw her last he has learned to crawl, can sit for longer periods and has started using his walker.

We talked about adjusting the levels of Baclofen to decrease some of his spasticity. Last visit, we talked about the possibility of Crew being a candidate for a Rhizotomy. This time when I brought it up she said that Crew might not even need the Rhizotomy. With the progress that he is making right now it is best to focus on his therapy and just wait and see. She didn't think his spasticity was severe enough to justify Botox either, yet.

Dr Rehab believes that if a child can sit by age 2, they will walk (with assistive devices) by age 5. She indicated that Crew fit within that timeline so I asked her if she considers Crew as a child that can sit... she said yes. Sitting is all relative anyway. You know, I often tell people that he can't sit because to me "he can't!" unless I situate his legs and prompt him to put his hands out to the side.... okay then he can sit... until he tips over. Ha Ha!

I love positive Dr's!

Spelling Bee

S spelled his way to the school spelling bee. This is his second year to participate. S is really smart and self-motivated. I've been so thankful for that because it is one less thing to worry about. For the past week or so we've been practicing the words and he has kind of struggled with some of them. I've been drilling the Beginning words with him and we didn't feel like he was ready to move on to the Intermediate words so we didn't study the Intermediate or Advanced words.

I've been so worried that S would get out on the first or second round and praying that he would do okay!

Well, on Friday I went to the school and watched as S outspelled over 25 kids. He came home with a 3rd Place trophy and a spot on the District level Spelling Bee.

I don't know who is more proud, S or myself!

Audiology

I almost backed out of Crew's Audiology appointment tonight. I'm always running and I didn't want to have to drive the canyon again tonight but I've already cancelled twice and I need an updated hearing test for the upcoming IEP. So we went.

During the hearing test Crew wasn't responding to sounds in his right ear. He kept zoning out during the test which I think is more seizures. The results of the left ear were consistent with past exams but the results of the right were inconclusive.

The Audiologist tested the pressure in his ears with a nifty machine (I don't remember what he called it) and immediately discovered that he has pressure/fluid behind the eardrum. Crew has already been on Amoxicillan for 7 days for a Sinus Infection. He wants us to finish the dose and come back for another test. If there is still pressure he will send us to the ENT.

He is worried about the infection causing additional hearing loss. There is a possibility that Crew's hearing impairment could be progressive. I don't really think it is... but we'll see. That is a road I don't want to travel. But then again, who's choosing!

Does it sound a little crazy to wait another week to see the ENT? Is it really necessary to finish the antibiotic? I don't want this infection to drag on and on but maybe there isn't anything the Dr. can do if I'm in the middle of the Antibiotic.

Tomorrow we have Dr. Rehab again! I've really been looking forward to it but now that I know Crew is still miserable... I feel bad dragging him there. And it's too late to cancel. O' Bother.

Does it ever end?

We've gone through more boxes of tissues in the past month than we do the rest of the year. I feel like a nose-wipin' Queen. You know it's bad when your child sneezes and you run from the other room, dive for the tissues and lunge toward Crew in an attempt to save him from a mountain of goo!

Crew and H had five days of fever with colds. Finally, H went back to school and I thought Crew was getting better but he started acting worse. He was lethargic, no appetite and had constant nose bleeds. After a visit to the Pediatrician we concluded that he must have a Sinus Infection. We started him on antibiotics last Friday and he acted more himself today. However, I'm still force feeding him in an attempt to get his Seizure Meds down. It's pretty sad when your child won't even go for the Chocolate Chip Mint IceCream trick!

100 THINGS ABOUT ME!

I can't believe I finally made it! I reached my 100th post! I started blogging to keep some of the less informed family and friends updated on Crew's achievements, milestones and struggles and also to have a record, or journal. It didn't take me long to figure out that the majority of my readers would be unknown bloggers floating through this blogosphere. I've enjoyed getting to know all of you and appreciate you sharing thoughts and ideas with me. Blogging has become my outlet, my therapy. I've written this as a celebration of 100 posts!

100 Things about Me

1. I’m a member of The Church of Jesus Christ of Latter Day Saints.
2. I was born the 3rd child of Seven.
3. I was the first child in our family born in the hospital. The oldest was born at home and the second one in the car.
4. I don't remember anything about it. LOL.
5. My first memory is at age 2 1/2.
6. I got my finger stuck under the big heavy church doors. My mother, not knowing that my hand was stuck, quickly yanked me up tearing off my birdie finger.
7. Luckily, the doctor was able to sew it back on.
8. Fortunately, I don't remember it.
9. What I do remember is wearing a cast from my finger tips to my elbow and using the cast to hit my brother over the head. That is my earliest memory.
10. My finger still works. LOL.
11. At school, I was a quiet kid.
12. At home I was obnoxious.
13. I did well in school.
14. I’ve been accused of being teachers pet.
15. In High School I ran track.
16. I was best at the 400M.
17. I broke the school record.
18. Someone else broke my record two weeks later.
19. I’ve never broken a bone.
20. I’ve never had lobster.
21. I don’t really want to.
22. I like breaded shrimp.
23. I like Sizzler.
24. My sister works there.
25. She brings me lots of shrimp.
26. My first real job was cashier at the local grocery store.
27. I worked there for 7 years.
28. I paid my way through college.
29. I lived on a farm for 18 years.
30. We worked a lot.
31. I find physical work rewarding.
32. I like summer.
33. I like the smell of fresh cut grass.
34. I like gardening.
35. We raised rabbits and pigs.
36. My mom fed us rabbit meat.
37. We didn’t know.
38. We didn’t ask.
39. I like pork better.
40. I’ve never felt a closeness or bond with an animal.
41. I wonder why?
42. My boys want to get a dog or a cat.
43. They like animals.
44. I like flowers. Dogs and flowerbeds don’t mix.
45. I’m not much of a swimmer. I could save my own life but not yours.
46. I’m a ½ foot shorter than two of my sisters.
47. I weigh the same as I did when I got married.
48. My shape is different though.
49. I’ve given birth 3 times… One emergency induction, one natural (no epidural) and one emergency C-section.
50. I’ve been parasailing.
51. I’ve been bungee jumping.
52. I like to hike.
53. I like camp fires.
54. I like boating.
55. I like to ski. Water & Snow.
56. I think reading novels is relaxing.
57. I am currently not reading anything. I haven’t had time recently.
58. I teach 8 and 9 year old scouts.
59. I hung the Christmas lights by myself this year.
60. I hate being put on the spot and I don’t like confrontation.
61. I earned a bachelors degree in Business Finance.
62. I was a true Aggie. Once a true Aggie, always a true Aggie. If you don’t know what I’m talking about then don’t worry about it.
63. I slept in a snow cave as a youngster. It was about 10 or 20 below zero.
64. I don’t like the cold. In the Winter, I turn into a hermit.
65. I drive a van and am proud of it!
66. I have dreams that my “Crewser” will walk. I dream that he can talk.
67. I don’t watch much TV. However, I am looking forward to watching “LOST”. Where are you “Lost”? I’m Lost without you!
68. My birthday is in February. I want to celebrate it in June. February is cold!
69. I like being a mom.
70. I collect children’s books.
71. I like a clean house but am learning that a lot of things are more important than a clean house.
72. I’m a morning person. However, the 4:00 am morning rituals started by DS #3 are wearing me out. I use to get up and go walking every morning at 5:30 but he ruined that program.
73. I like to go running with DS#1. I should do it more often.
74. During a trip to the Bahamas my DH and I were stung by a school of jellyfish. We were snorkeling when DH had a huge jellyfish wrap around his neck. He had red marks across his neck and chest. I had red burn marks on my arms.
75. My DH and I built our first house. We did the framing, roofing, finish work, masonry, painting, and more.
76. My favorite part was shingling and hanging the rock on the outside of our home.
77. I hated scaling the trusses. It was January and we had to melt the ice off before we could get up there. DH was on a business trip so my little brother came and we put the sheeting on the roof together.
78. We sold the house 3 years later and the new owners have trashed it.
79. I drink DIET COKE!
80. I love comfort foods like donuts, bread, potato chips.
81. I like to cook but have really been slacking in that area for awhile now. When we first got married DH taught me how to cook meat. During the Summer I use the grill almost everyday.
82. I don’t like to sew. I get frustrated because I can’t visualize. I have to get help from DH. DH is more domestic than I am.
83. I’m trying to learn sign language. I’ve been working on teaching Crew the same 10 signs for two years now and we’re not getting anywhere. It’s discouraging. Maybe if it was paying off, I could get excited about it.
84. I don’t feel like the same person that I was 3 years ago… before I became the mother of a special needs child.
85. I never thought I’d be on this path.
86. I am more compassionate than I use to be.
87. My favorite flower is the Daisy.
88. I’m learning how to can. I don’t understand why it’s called “canning” because most people use bottles.
89. I work at a golf course yet I’ve never been golfing.
90. As a child I learned to Ice Skate on the river bottoms behind our farm.
91. The first thing I learned to drive was an old Jeep with a sprinkler trailer hooked on.
92. I like bright colors.
93. Today I was pulled over because my plates expired in September. LOL. I had no idea. In fact, my registration was up-to-date but I forgot to put on the little sticker.
94. I’m done having children :(
95. I want to take my kids to Disneyworld like TXMommy but I’ll settle for Disneyland.
96. I want to take the boys to see Old Faithful.
97. I like riding 4-wheelers.
98. I wish for my DH to drive a nice truck instead of our beater Mazda but I don’t want another payment.
99. I think about money to much!
100. I want to get a manicure.

Oh this is fun!

The PAIN GAME

H has been home sick this week. As a mom, sometimes its hard to determine when your child is sick enough to stay home and when its time to send them to school. H has a problem with honesty and so I have a hard time trusting him. This is something that we are working on. He challenges everything I say and do.

For example, this morning I told him that if he was going to stay home from school he was expected to sleep in until 8:30, eat healthy and no GameCube. I had to run a quick errand and he wanted to stay home. Before I left I explained that if I came home and he had been playing GameCube I would take the controls away. This is something I do quite often at our house. Last summer I boxed it up for 4 months which I plan to do again this summer. Anyway, after I threatened to take away the GameCube if he disobeyed his reply was "FOR HOW LONG?". Yikes! As if he has to decide if the punishment outweighs the reward. This is something he does to me about 90 times a day. I call it the PAIN GAME. How big is the pain? If its not too terrible then I will "Do what I want"... a frequent statement from H's little mouth. Oh, how will I ever mold this little guy into a responsible adult. That is what we are trying to do here. I often remind myself that I'm raising my kids to be responsible adults someday.

On a good note, he didn't touch the GameCube while I was out. Maybe, there is hope!

The Sicklies

The two youngest boys are sick. They've had fever and coughs, congestion for 4 days straight. DH goes back to work tomorrow. It's pathetic, but I'm kinda glad that I will be forced to stay home tomorrow with the sick boys. Crew has been up all night for several days. He is so miserable that he groans and cries. He wants to be held. I'm trying not to get it but it will be a miracle if I don't. I can't help but kiss the baby. I'm drinking Airborne. It's saved me before. I'm crossing my fingers.

The New Year.. 2007

I'm not big into New Years Resolutions so I'm going to set a couple of goals that are attainable. However, I realize that at least one of these goals is kind of out of my control to some degree but these are the things I want to focus on.

1. Track our money/budget through the Microsoft Money software. I already started with this today by setting up our banking accounts. I would also like to track bills paid and categorize where they money goes.

2. Acquire some level of peace with the decisions I've recently made concerning relationships in my family. I want to attend the temple monthly and continue to pray daily.

3. Get Crew's seizures under control. Now, I realize that somethings are out of my control but I plan to keep up on the meds... adjusting this and that through the advice of the Neurologist and implementing lots of fasting and prayer on my part.

The past year has probably been the hardest one ever! I want to put it behind me.