Well, there it is. The entire set of blog entries from m old March of Dimes share blog I had years ago. As I read through some of these I was amazed at how fast time has flown by. Things have gotten much busier! In some ways more difficult and in some ways much better. I am so glad I found these so I could post them here so I could read through them and remember the things we went through.
I had better go to bed now! It is 15 past midnight. I was planning on going to bed three hours ago! Paul is out of town so I need as much rest as possible because I am doing this single parent thing. Luckily he will be back in three days. Tomorrow morning I will be napping when David takes his nap!
Tuesday, October 15, 2013
It has been a long time!
Jun 23, 2009 10:50 PM
Wow, I haven't written in a long time. I was able to find my old blog. The baby(Elijah) I talked about in the last blog is now not so much a baby. He is almost 18 months old now!
Joshua(my preemie 25 weeks) just finished first grade. He had a great teacher and I am pretty proud of him and how far he has come. My daughter just finished kindergarten and growing way to fast. Nathan just turned four on Saturday.
When Joshy turns 8 in one month he will be starting cub scouts and special Olympics. He will really have a lot of fun.
Well, I had better go. I needs to finish cleaning up the house! I am so glad it is summer break...more time with the kids!
Joshua(my preemie 25 weeks) just finished first grade. He had a great teacher and I am pretty proud of him and how far he has come. My daughter just finished kindergarten and growing way to fast. Nathan just turned four on Saturday.
When Joshy turns 8 in one month he will be starting cub scouts and special Olympics. He will really have a lot of fun.
Well, I had better go. I needs to finish cleaning up the house! I am so glad it is summer break...more time with the kids!
COMMENTS
- Jun 23, 2009 11:24 PMThanks for catching us up. :-) The pictures you posted are beautiful.Tommie
- Jun 23, 2009 11:41 PMI love the pics that you posted!! Those are amazing and such a beautiful family.Thanks for sharing the updates.Tracy
- Jun 30, 2009 2:52 AMI am so glad to see you back. I am glad that everyone is doing so well.Katie
almost time!
Dec 10, 2007 10:29 PM
Well, this will be a long blog, I haven't posted in so long! So much has gone on. I have been so busy, I read your blogs, but haven't had a chance to reply much...hopefully I will be able to soon!
I will be 36 weeks tomarrow. My doctor is going to take out my cerclage on Friday! Yahoo....what a milestone for us! My baby dropped several weeks ago and at my last check-up he was already at a zero station(for those of you who that means something to). My cervix is holding up fine, but the doctor has warned us that with how big the baby is and how low he is, if my cervix moves forward, my cerclage would rip right though. Ouch! He said it would be quite the clean up because he placed a different kind of cerclage that used a thick mesh tape.
The doctor also was talking half serious when he told us about home deliveries and babies born on the bridge on the way to the hospital. I am a likely candidate for that because my labors have gone so quickly even for being induced. I dilate silently and don't even realize it. I get so many Braxton hicks everyday and so much pelvic pressure and pain, it is hard to tell what is o.k. and what is not. Anyway, I will most likely be induced again to prevent an unplanned home birth. My husband is pretty worried about that. We have both had nightmares about this and sometimes when I have a braxton hick and I lean over a chair, he asks me if I am o.k. and makes sure I am not having a real contraction and reminds me that he does not want to deliver a baby!!
We are so excited to have him here with us finally. The kids are really excited and talk about him all of the time. They think it is pretty funny when my belly moves all around and they can see it. It will be interesting to have four kids at home.
My friend gave me a really nice baby shower. Quite a few people showed up and we received some really nice gifts for the baby. We are all set now. we even got a car seat cover for the cold weather. It will work so great..we have never had one, but where we live it is so cold and windy, so the car seat cover will beat having to drape blankets over the car seat and keep them from flying off! We have done that a lot with the last ones. We also got a really cute mobile which is great because our old one broke after having gone through three kids. we got some really cute outfits too.
Last Friday, my mo, sister, daughter and I went ot see the Nutcracker. We go every year, but this year was a little different because it was the first year my sister didn't dance in it. She decide to quit ballet to try some other things. Anyway, My daughter, Hannah, just loves going. She takes ballet also and from what other people have told me she has a natural gift for dancing. every performance they raffle Clara's crown and the Nutcracker's sword during intermission. Every little(and big) girl wants that beautiful crown. Well, this year out of the hundreds of people my Hannah got the Clara Crown!! She was so excited. My sister walked her up on the stage for me and they placed the crown on Hannah's head. They asked her her name and she said it in the microphone...then the who audience "ahhhhhhhed." she was one huge smile. after the performance we took her to meet some of the dancers and get their autographs...they all noticed her as having won the crown. It was truly her dream come true, and ours(my mom and sister....and even my dad were so excited).
This week we have several doctor's appointments, including an out of town trip through some yucky mountain passes. One is for Josh with his developmental pediatrician. We will talk about his troubles in school and the possibility of a learning disorder. He is doing a little better in school. He goes for one hour and about twenty minutes a day and has a para educator to help him. It is sad for me to think that he has school troubles, because he is such a sweet boy and is really so smart. He amazes everyone with his reading abilities and is so scientifically minded. He has trouble writing and staying on task. His processing is slow and gets frustrated easily which leads to noncompliance. I had no idea sending him to school would be like this!! We have to remember that he was a 25 weeker with extreme brain damage and it is amazing that he can even walk, talk and reason. It is amazing that he is not mentally impaired...so he is bound to have some sort of learning issues or coping problems. Tomorrow we have another meeting with his team to discuss his progress and to talk about our next steps to take.
I am looking forward to Christmas and enjoying every bit of the holiday season. I took the kids out to play in the snow, we have all our decorations up, presents bought and wrapped and enjoying the Christmas parties, music and traditions. I love to hear my children sing the Christmas carols about our Savior. They sound like little angels. I like to remember and think about our son Jacob that we lost....we miss him and the pictures we take still look like someone is missing, but I know he is busy and happy. I know that someday we will see him again. This knowledge helps me get through each day, each holiday...without it I would feel so empty and lost.
I hope you all enjoy your holiday seasons and I will write again when our little boy is finally born and here with us.
Take care,
Tiffany
I will be 36 weeks tomarrow. My doctor is going to take out my cerclage on Friday! Yahoo....what a milestone for us! My baby dropped several weeks ago and at my last check-up he was already at a zero station(for those of you who that means something to). My cervix is holding up fine, but the doctor has warned us that with how big the baby is and how low he is, if my cervix moves forward, my cerclage would rip right though. Ouch! He said it would be quite the clean up because he placed a different kind of cerclage that used a thick mesh tape.
The doctor also was talking half serious when he told us about home deliveries and babies born on the bridge on the way to the hospital. I am a likely candidate for that because my labors have gone so quickly even for being induced. I dilate silently and don't even realize it. I get so many Braxton hicks everyday and so much pelvic pressure and pain, it is hard to tell what is o.k. and what is not. Anyway, I will most likely be induced again to prevent an unplanned home birth. My husband is pretty worried about that. We have both had nightmares about this and sometimes when I have a braxton hick and I lean over a chair, he asks me if I am o.k. and makes sure I am not having a real contraction and reminds me that he does not want to deliver a baby!!
We are so excited to have him here with us finally. The kids are really excited and talk about him all of the time. They think it is pretty funny when my belly moves all around and they can see it. It will be interesting to have four kids at home.
My friend gave me a really nice baby shower. Quite a few people showed up and we received some really nice gifts for the baby. We are all set now. we even got a car seat cover for the cold weather. It will work so great..we have never had one, but where we live it is so cold and windy, so the car seat cover will beat having to drape blankets over the car seat and keep them from flying off! We have done that a lot with the last ones. We also got a really cute mobile which is great because our old one broke after having gone through three kids. we got some really cute outfits too.
Last Friday, my mo, sister, daughter and I went ot see the Nutcracker. We go every year, but this year was a little different because it was the first year my sister didn't dance in it. She decide to quit ballet to try some other things. Anyway, My daughter, Hannah, just loves going. She takes ballet also and from what other people have told me she has a natural gift for dancing. every performance they raffle Clara's crown and the Nutcracker's sword during intermission. Every little(and big) girl wants that beautiful crown. Well, this year out of the hundreds of people my Hannah got the Clara Crown!! She was so excited. My sister walked her up on the stage for me and they placed the crown on Hannah's head. They asked her her name and she said it in the microphone...then the who audience "ahhhhhhhed." she was one huge smile. after the performance we took her to meet some of the dancers and get their autographs...they all noticed her as having won the crown. It was truly her dream come true, and ours(my mom and sister....and even my dad were so excited).
This week we have several doctor's appointments, including an out of town trip through some yucky mountain passes. One is for Josh with his developmental pediatrician. We will talk about his troubles in school and the possibility of a learning disorder. He is doing a little better in school. He goes for one hour and about twenty minutes a day and has a para educator to help him. It is sad for me to think that he has school troubles, because he is such a sweet boy and is really so smart. He amazes everyone with his reading abilities and is so scientifically minded. He has trouble writing and staying on task. His processing is slow and gets frustrated easily which leads to noncompliance. I had no idea sending him to school would be like this!! We have to remember that he was a 25 weeker with extreme brain damage and it is amazing that he can even walk, talk and reason. It is amazing that he is not mentally impaired...so he is bound to have some sort of learning issues or coping problems. Tomorrow we have another meeting with his team to discuss his progress and to talk about our next steps to take.
I am looking forward to Christmas and enjoying every bit of the holiday season. I took the kids out to play in the snow, we have all our decorations up, presents bought and wrapped and enjoying the Christmas parties, music and traditions. I love to hear my children sing the Christmas carols about our Savior. They sound like little angels. I like to remember and think about our son Jacob that we lost....we miss him and the pictures we take still look like someone is missing, but I know he is busy and happy. I know that someday we will see him again. This knowledge helps me get through each day, each holiday...without it I would feel so empty and lost.
I hope you all enjoy your holiday seasons and I will write again when our little boy is finally born and here with us.
Take care,
Tiffany
COMMENTS
- Dec 10, 2007 11:03 PMTiffany,Congratulations on making it to 36 weeks. That's awesome.I'm so glad that you had a nice shower. It's great to have good friends who love you. :-)Please keep us posted. And definitely go for the induction to avoid a home/car birth!!! Yikes. :-)Tommie
- Dec 11, 2007 5:41 AM36 weeks! That's awesome!!! Things seem to be going very well! I definately think delivering at the hospital will be better than the car, home, or bridge....LOL!As for the winner of the crown---WOW!! That had to be exciting!!Tracy
- Dec 11, 2007 8:21 PMWoohoo for 36 weeks! Awesome.I hope everything gets sorted out with Josh's school work. I have an older brother who sounds very similar. Quite smart, but a very slow processor. Hard to keep on task. Just doesn't get social cues. My brother was diagnosed with Asperger's a year or so ago. The good news? He graduated from a Big 10 college with his Bachelor's degree a few years ago.Can't wait to hear the baby is here and home safely!Hugs,Mary
#0 weeks, school and a wobbly tooth
Nov 2, 2007 7:52 PM
Well, I am now 30 and 1/2 weeks along. My tummy is getting pretty big. I can't wait until the cerclage is taken out...I am counting down the weeks. We still haven't decided on a name for our little boy.
I don't know if I mentioned it before, but we pulled Joshua out ot his private school. His problems with school were multiplying and he was sad and angry a lot. We have since enrolled him in public school in hopes of getting him a para educator. He is still in the process of getting observed. He has had testing done too. There is a problem, but we don't know all the details on that yet. He passed the Kindergarten test with flying colors(we knew he would...he pretty much knows everything he will learn in kindergarten already...academic things).
So this week he started going to class one hour a day. The first couple of days he did great. The only problem was when I picked him up he cried and cried because he wanted to stay. Well, yesterday when I went to pick him up I didn't see him anywhere. I was thinking(oh great he ran off...). He still doesn't seem to get it when it comes to strangers and street smarts. So I went into the classroom to see if maybe he was there. The teacher said he had a meltdown and was in the principle's office. It all started because they were starting their workbooks on a page other than the first page...he didn't like that. Then he started jumping around and make noises. Then he curled in a ball and refused to stand up...the principle had to carry him out. this is what happened at the last school, but they didn't know what to do with him. Luckily there were people observing him yesterday.
I really don't understand why he is acting like this...he seems like a different boy than he was three months ago. He has always been stubborn(that is probably why he survived at 25 weeks), but he has also been very respectful. He has always been slow to process different kinds of information, but he didn't act like a dinosaur or a frog. He gets upset over little things. It is a good day if he only cries twice a day. I am not used to this. This is my boy. I love him...I don't know how to help him. When I would pick him up from preschool they would tell me how polite he was. Now most of the time when I pick him up he has been in trouble.
we thought it was his shunt, but we had that checked. Maybe it is just his personality coming out...it scares me a little. I hope he does better today. Our thoughts on him having NLD or aspergers are probably accurate. We have an appointment set up with his developmental pediatrician in December...maybe he can help us figure out this puzzle so we can help Josh.
I truly thought he would do great in school. Never in my wildest dreams did I imagine he would have behavior problems! That just doesn't seem like the Joshua we have known and raised. There is a deeper problem here...I am praying for an answer to help him.
Hannah and Nathan are doing well. Hannah(4) notices all the time that is being taken by Joshua's needs. She asks us to spend time with just her without the boys. She is starving for attention and really needs it. I have tried to make more time for just her. It is pretty sad when she tells you that no one has time for her anymore and has tears running down her face. Then she just wipes them off and acts like nothing is wrong. She acts like a mini grownup a lot but really she is just a little girl who needs extra time(she has always needed that).
Well, enough of all that. I hope things settle down a bit. i am exhausted from running to this place to that place. I am tired of talking to school people and going to never ending therapy sessions. Sometimes, I just want to sit down and play for hours and hours with my kids and then play games with my husband when he comes home. Things always get better.
On a different note, Joshua has a loose tooth! He was so excited when he found that out...so were the other kids. they ran all around the house shouting for joy. Then Josh let us know that we needed to buy some apples so he could bite them and have his wobbly tooth get stuck in the apple! Pretty clever thinking!
Well, the boys are awake now, so I better get the day started. Thanks for reading. It helps to spill some of my worries down in writing. It is nice to know I am not alone(I hope!) with all these school issues.
Have a good day,
Tiffany
I don't know if I mentioned it before, but we pulled Joshua out ot his private school. His problems with school were multiplying and he was sad and angry a lot. We have since enrolled him in public school in hopes of getting him a para educator. He is still in the process of getting observed. He has had testing done too. There is a problem, but we don't know all the details on that yet. He passed the Kindergarten test with flying colors(we knew he would...he pretty much knows everything he will learn in kindergarten already...academic things).
So this week he started going to class one hour a day. The first couple of days he did great. The only problem was when I picked him up he cried and cried because he wanted to stay. Well, yesterday when I went to pick him up I didn't see him anywhere. I was thinking(oh great he ran off...). He still doesn't seem to get it when it comes to strangers and street smarts. So I went into the classroom to see if maybe he was there. The teacher said he had a meltdown and was in the principle's office. It all started because they were starting their workbooks on a page other than the first page...he didn't like that. Then he started jumping around and make noises. Then he curled in a ball and refused to stand up...the principle had to carry him out. this is what happened at the last school, but they didn't know what to do with him. Luckily there were people observing him yesterday.
I really don't understand why he is acting like this...he seems like a different boy than he was three months ago. He has always been stubborn(that is probably why he survived at 25 weeks), but he has also been very respectful. He has always been slow to process different kinds of information, but he didn't act like a dinosaur or a frog. He gets upset over little things. It is a good day if he only cries twice a day. I am not used to this. This is my boy. I love him...I don't know how to help him. When I would pick him up from preschool they would tell me how polite he was. Now most of the time when I pick him up he has been in trouble.
we thought it was his shunt, but we had that checked. Maybe it is just his personality coming out...it scares me a little. I hope he does better today. Our thoughts on him having NLD or aspergers are probably accurate. We have an appointment set up with his developmental pediatrician in December...maybe he can help us figure out this puzzle so we can help Josh.
I truly thought he would do great in school. Never in my wildest dreams did I imagine he would have behavior problems! That just doesn't seem like the Joshua we have known and raised. There is a deeper problem here...I am praying for an answer to help him.
Hannah and Nathan are doing well. Hannah(4) notices all the time that is being taken by Joshua's needs. She asks us to spend time with just her without the boys. She is starving for attention and really needs it. I have tried to make more time for just her. It is pretty sad when she tells you that no one has time for her anymore and has tears running down her face. Then she just wipes them off and acts like nothing is wrong. She acts like a mini grownup a lot but really she is just a little girl who needs extra time(she has always needed that).
Well, enough of all that. I hope things settle down a bit. i am exhausted from running to this place to that place. I am tired of talking to school people and going to never ending therapy sessions. Sometimes, I just want to sit down and play for hours and hours with my kids and then play games with my husband when he comes home. Things always get better.
On a different note, Joshua has a loose tooth! He was so excited when he found that out...so were the other kids. they ran all around the house shouting for joy. Then Josh let us know that we needed to buy some apples so he could bite them and have his wobbly tooth get stuck in the apple! Pretty clever thinking!
Well, the boys are awake now, so I better get the day started. Thanks for reading. It helps to spill some of my worries down in writing. It is nice to know I am not alone(I hope!) with all these school issues.
Have a good day,
Tiffany
Monday, October 14, 2013
One more wierd thing!
Oct 3, 2007 8:59 AM
First off, thank you for your comments on my last blog. Josh's schooling has been a huge problem still. I have pretty much decided to take him out of the school he is in now and look for other options. I fear that the only option for him is home school. I can teach, but you have to be really organized. Anyway, we have had a meeting with the principle. We have tried to make appointments with specialists and have contacted the local school psychologist to help us to help Joshua.
Through all of this he has been a bit stressed. I know because he got another cold sore and this morning he woke up and had a weird rash on part of his face. My first thought was, "oh no...that looks like chicken pox!" I made an Dr.s appointment for him and it wasn't chicken pox(by the way he has had the chicken pox vaccine), he has shingles! Yes shingles. It is a very rare thing for a kid his age to get. I feel so bad for him. So, we are house bound for a little while because he could give chicken pox to someone who hasn't had it before. He didn't catch shingle from anyone...it is impossible. In some people(anyone who has had chicken pox or the vaccine) it just pops up. The Dr. thinks it could have to do with his stress level and a very strange fluke!
Anyway, I also had my drs appointment today. i am 26 weeks now and growing like crazy. I had and ultrasound and the baby looks great! His head was measuring at 27 weeks 5 days! yikes!!! His ventricles are fine(I asked right away because Josh has hydrocephalus). My kids just have large heads I guess. My cervix and cerclage look great and I had my first FFN test for this pregnancy done today. it is nice to know that although I am having tons of braxton hicks and pelvic pain, that it isn't making my cervix change. 11 more weeks until my cerclage is out!!!
Tiffany
Through all of this he has been a bit stressed. I know because he got another cold sore and this morning he woke up and had a weird rash on part of his face. My first thought was, "oh no...that looks like chicken pox!" I made an Dr.s appointment for him and it wasn't chicken pox(by the way he has had the chicken pox vaccine), he has shingles! Yes shingles. It is a very rare thing for a kid his age to get. I feel so bad for him. So, we are house bound for a little while because he could give chicken pox to someone who hasn't had it before. He didn't catch shingle from anyone...it is impossible. In some people(anyone who has had chicken pox or the vaccine) it just pops up. The Dr. thinks it could have to do with his stress level and a very strange fluke!
Anyway, I also had my drs appointment today. i am 26 weeks now and growing like crazy. I had and ultrasound and the baby looks great! His head was measuring at 27 weeks 5 days! yikes!!! His ventricles are fine(I asked right away because Josh has hydrocephalus). My kids just have large heads I guess. My cervix and cerclage look great and I had my first FFN test for this pregnancy done today. it is nice to know that although I am having tons of braxton hicks and pelvic pain, that it isn't making my cervix change. 11 more weeks until my cerclage is out!!!
Tiffany
COMMENTS
- Oct 3, 2007 7:41 PMI am so sorry Josh has been having trouble with school. Very frustrating.Homeschooling isn't as difficult as you think. I was homeschooled from 6th grade on. My two youngest siblings were homeschooled exclusively until they graduated high school. You do need to be organized, but most of that can be accomplished just by having a schedule and a set place where Josh would do his schooling.You might also like to know that all but one of my brothers (there are 8 of us kids) have gone to college. Half of us have graduated with a 4 year degree. The other half went for associates degrees in a specialized field. My sister, the youngest, will graduate with her Bachelor's this winter.Hang in there. Hope Josh get over the shingles quickly.Mary
- Oct 3, 2007 11:23 PMI'm sorry Josh is having a hard time right now. It may be good to weigh all your school options and do what you feel is best for him.Shonda
- Oct 4, 2007 6:25 PMTiffany,If you are not satisfied with the school that Josh is in, you have to do what is best for him. You do what you feel in your heart.Your his Mom, you know him better then anyone!! :)Take care,Colleen
What is going on? [2]
Sep 21, 2007 12:14 AM
Well, the last few weeks have been very stressful and very busy. We think Josh has a learning disorder called nonverbal learning disorder. In the first week and a half of kindergarten I got called twice to come and pick him up early from school. He had to go talk to the principle because he refused to write anymore and shut down. He wouldn't talk to anyone. Luckily my husband was with me that day and went and talked with his teacher and the principle and vice principle. They want to help him. We thought he was just being naughty.
Doing his homework was terrible!!!!!!!!!!! It took five hours to get only part of it done. I had to sit there the whole time and guide and direct him. I was so tired. He was tired and I feel really bad because both my husband and I thought he was just being naughty so we punished him(naughty seat/privileges), but it did no good. He still didn't do the work he needed to. We started to wonder if his shunt was malfunctioning and that was leading to these behavioral issues.
What really topped it off was when my husband had a man to man talk with Joshua about doing what he needed to at school and home. I really have a wonderful husband. The kids are so lucky to have him as a father. He gently talked with Josh about doing what was right (almost everyday in his prayer, Josh says "Please help me to make good choices."). The sad part was when my husband asked Josh how he felt. Josh replied, "happy sad." He was so confused. We realized there was more to this than just a kid not wanting to conform to the rules.
We were told that he did well at everything else at school...however when writing time came he did terrible! We started to notice that Josh was angry and sad all the time. He told me he did not want to go to school anymore and cried when it was time to go to school. This is not like my little boy.
One night I prayed hard for an answer or some type of help for Josh. I studied a bit. That night I slept terrible. I had nightmares about Josh at school. Early the next morning I gave up on trying to sleep and searched the internet. I came across some information on Nonverbal learning disorder. It fits Josh almost perfectly. It explained the writing problems, it explained why he learned to read and read so well at such an early age, it explained why he doesn't seem to understand social cues(I remember once he asked why there was a raindrop by my eye, he has asked why my forehead has wrinkles--different mood changes that change facial cues). It explained why he asks so many question instead of trying things out to find out for himself. It explained why following multiple directions is so difficult and why he doesn't seem to notice when we are getting impatient or trying to discipline. It explains why he still has problems with cross body movements. This explains the anger and sadness suddenly brought on by attending school and required to write mass amounts that are nearly impossible for him to do. I feel like my prayer was answered. We are in the process of finding the right specialists to help us help Josh.
I sat in one of his classes and saw first hand what the problem was. EH was fine until writing time. Then it was quite sad. He looked at his paper and almost started to cry. He looked at me and I smiled real big and waved at him. He smiled at me and looked at his paper again. Several times he looked to me for help. It was so sad for me to visually see how sad he was how trapped he must feel. We have shared the information we found with the school and they have modified a little bit. He hasn't been sent home since and doesn't cry every morning before school. We are overwhelmed with what we have to learn to help him. He can't spend his days at school, then therapy, then do homework and practice his therapies and never have time to just be a kid. How stressful is that?
I took him to his first speech therapy at the public school district yesterday(he is in a private school). I came home feeling dejected and sad. He tried so hard, and the lady was nice, but rough. She didn't give him the time he needed to answer her questions. At the end he picked up a flash light they had been using. She said, "that is mine...I didn't say you could play with it." He looked kind of confused. she said," what do you say if you want to hold my flashlight?' He said,"Please" she said, "that is not the way to ask...how do you ask?" He increased ht feeling in his voice and said,"Please?" She said," that is not the way to ask. At this point Josh was about tho cry. He looked so confused. I was confused also...Isn't please what you are supposed to say? Anyway, She then told him he has to say "may I please hold your flashlight?" How anal!!!!!!!!!!! I am not sure what to do about her. It may sound like I am over reacting ,but he truly didn't understand what she wanted and doesn't read body cues very well. I wanted to scoop him up and tell her off, but I was confused myself and in shock. Last night I had a dream that I told a school therapist off. I didn't sleep very well.
On a different note, Joshua had his neurosurgeon appointment earlier this week. He did well with his x-rays and CT scans and at his appointment. His shunt looks great, as do his ventricles...so that is one worry to wipe off our list!!! The Dr. thought we should definitely look into getting help for Joshua, but warned that is is hard to find the kind of help we are looking for and expensive. We will do what it takes.
I am now 24 1/2 weeks along with my pregnancy. I am so glad I have hit the age of viability! I am counting down the weeks until my cerclage is taken out. I have so many braxton hicks and last Saturday I had a real contraction. It was very painful of course and I scared me to death. I was imagining another tiny boy attached to wires and tubes. Luckily I didn't have another one and no blood...the baby was moving fine, so I figured I was o.k. We can't decide on a name for him. We have been calling him baby Elijah. Even the kids do. my husband says he isn't completely convinced that is the right name for this baby. What do you guys think? What do you like better? Elijah or David?
I have pretty much come to the conclusion that after this baby there should be no more...not even adoption. I had wanted to adopt one more little girl in a few years, but with these unexpected school problems that most likely won't go away and so many drs visits all of the time, I am beginning to feel like it is best just to keep our family as it is. This has been very hard for me to cope with. We had wanted seven children. sometimes I am disappointed with myself...with my body. It didn't work how I wanted it to. I feel sad that I will never had another little girl to hold and dress and that will grow up to be a companion to me and Hannah(my daughter). I really need to get over these irrational feelings and move on. I have done a great job in all reality. I will have given birth to five children(it is sad how I make myself feel incomplete and like a failer for not having more). I need to not blame myself every single time something goes wrong with Joshua. Every time he is sick, or we find a new problem or issue with him I blame myself. I go back to when I was pregnant with him and his twin. I blame myself for failing them. I tell myself that if I could have just kept them in a little longer Jacob would still be here and Joshua wouldn't have to suffer and have problems. I know deep down inside my heart that I midi my best and I couldn't will my body to keep them in...but I still blame myself. How long will this go on? I just can't live all my life feeling bad like this. At night when I check on the kids I still creep into Joshua's room and make sure he is breathing. He is six!!!!! Inside, I go back to when he was so tiny. Sometimes at night he looks to helpless and I feel so bad that he has had a hard day and I can;t do much to make things much better. I can't go into his brain and fix what was damaged. I love him so much. He has such a sweet spirit. He has blessed our lives far beyond what I ever imagined possible. without him I wouldn't be who I am today. He has taught me how to sacrifice, how to feel empathy,how to truly love, how to be patient, how to trust and how to rely in prayer and the atonement of Jesus Christ.
Thanks your reading ...I really needed to get some things off my mind.
Tiffany
Doing his homework was terrible!!!!!!!!!!! It took five hours to get only part of it done. I had to sit there the whole time and guide and direct him. I was so tired. He was tired and I feel really bad because both my husband and I thought he was just being naughty so we punished him(naughty seat/privileges), but it did no good. He still didn't do the work he needed to. We started to wonder if his shunt was malfunctioning and that was leading to these behavioral issues.
What really topped it off was when my husband had a man to man talk with Joshua about doing what he needed to at school and home. I really have a wonderful husband. The kids are so lucky to have him as a father. He gently talked with Josh about doing what was right (almost everyday in his prayer, Josh says "Please help me to make good choices."). The sad part was when my husband asked Josh how he felt. Josh replied, "happy sad." He was so confused. We realized there was more to this than just a kid not wanting to conform to the rules.
We were told that he did well at everything else at school...however when writing time came he did terrible! We started to notice that Josh was angry and sad all the time. He told me he did not want to go to school anymore and cried when it was time to go to school. This is not like my little boy.
One night I prayed hard for an answer or some type of help for Josh. I studied a bit. That night I slept terrible. I had nightmares about Josh at school. Early the next morning I gave up on trying to sleep and searched the internet. I came across some information on Nonverbal learning disorder. It fits Josh almost perfectly. It explained the writing problems, it explained why he learned to read and read so well at such an early age, it explained why he doesn't seem to understand social cues(I remember once he asked why there was a raindrop by my eye, he has asked why my forehead has wrinkles--different mood changes that change facial cues). It explained why he asks so many question instead of trying things out to find out for himself. It explained why following multiple directions is so difficult and why he doesn't seem to notice when we are getting impatient or trying to discipline. It explains why he still has problems with cross body movements. This explains the anger and sadness suddenly brought on by attending school and required to write mass amounts that are nearly impossible for him to do. I feel like my prayer was answered. We are in the process of finding the right specialists to help us help Josh.
I sat in one of his classes and saw first hand what the problem was. EH was fine until writing time. Then it was quite sad. He looked at his paper and almost started to cry. He looked at me and I smiled real big and waved at him. He smiled at me and looked at his paper again. Several times he looked to me for help. It was so sad for me to visually see how sad he was how trapped he must feel. We have shared the information we found with the school and they have modified a little bit. He hasn't been sent home since and doesn't cry every morning before school. We are overwhelmed with what we have to learn to help him. He can't spend his days at school, then therapy, then do homework and practice his therapies and never have time to just be a kid. How stressful is that?
I took him to his first speech therapy at the public school district yesterday(he is in a private school). I came home feeling dejected and sad. He tried so hard, and the lady was nice, but rough. She didn't give him the time he needed to answer her questions. At the end he picked up a flash light they had been using. She said, "that is mine...I didn't say you could play with it." He looked kind of confused. she said," what do you say if you want to hold my flashlight?' He said,"Please" she said, "that is not the way to ask...how do you ask?" He increased ht feeling in his voice and said,"Please?" She said," that is not the way to ask. At this point Josh was about tho cry. He looked so confused. I was confused also...Isn't please what you are supposed to say? Anyway, She then told him he has to say "may I please hold your flashlight?" How anal!!!!!!!!!!! I am not sure what to do about her. It may sound like I am over reacting ,but he truly didn't understand what she wanted and doesn't read body cues very well. I wanted to scoop him up and tell her off, but I was confused myself and in shock. Last night I had a dream that I told a school therapist off. I didn't sleep very well.
On a different note, Joshua had his neurosurgeon appointment earlier this week. He did well with his x-rays and CT scans and at his appointment. His shunt looks great, as do his ventricles...so that is one worry to wipe off our list!!! The Dr. thought we should definitely look into getting help for Joshua, but warned that is is hard to find the kind of help we are looking for and expensive. We will do what it takes.
I am now 24 1/2 weeks along with my pregnancy. I am so glad I have hit the age of viability! I am counting down the weeks until my cerclage is taken out. I have so many braxton hicks and last Saturday I had a real contraction. It was very painful of course and I scared me to death. I was imagining another tiny boy attached to wires and tubes. Luckily I didn't have another one and no blood...the baby was moving fine, so I figured I was o.k. We can't decide on a name for him. We have been calling him baby Elijah. Even the kids do. my husband says he isn't completely convinced that is the right name for this baby. What do you guys think? What do you like better? Elijah or David?
I have pretty much come to the conclusion that after this baby there should be no more...not even adoption. I had wanted to adopt one more little girl in a few years, but with these unexpected school problems that most likely won't go away and so many drs visits all of the time, I am beginning to feel like it is best just to keep our family as it is. This has been very hard for me to cope with. We had wanted seven children. sometimes I am disappointed with myself...with my body. It didn't work how I wanted it to. I feel sad that I will never had another little girl to hold and dress and that will grow up to be a companion to me and Hannah(my daughter). I really need to get over these irrational feelings and move on. I have done a great job in all reality. I will have given birth to five children(it is sad how I make myself feel incomplete and like a failer for not having more). I need to not blame myself every single time something goes wrong with Joshua. Every time he is sick, or we find a new problem or issue with him I blame myself. I go back to when I was pregnant with him and his twin. I blame myself for failing them. I tell myself that if I could have just kept them in a little longer Jacob would still be here and Joshua wouldn't have to suffer and have problems. I know deep down inside my heart that I midi my best and I couldn't will my body to keep them in...but I still blame myself. How long will this go on? I just can't live all my life feeling bad like this. At night when I check on the kids I still creep into Joshua's room and make sure he is breathing. He is six!!!!! Inside, I go back to when he was so tiny. Sometimes at night he looks to helpless and I feel so bad that he has had a hard day and I can;t do much to make things much better. I can't go into his brain and fix what was damaged. I love him so much. He has such a sweet spirit. He has blessed our lives far beyond what I ever imagined possible. without him I wouldn't be who I am today. He has taught me how to sacrifice, how to feel empathy,how to truly love, how to be patient, how to trust and how to rely in prayer and the atonement of Jesus Christ.
Thanks your reading ...I really needed to get some things off my mind.
Tiffany
COMMENTS
- Sep 21, 2007 9:58 PMTiffany,Wow, that is a lot to deal with at once. I really do hope you can find the help Josh really needs. I would talk to someone about finding a different therapist or something, you need someone that will understand his needs. Hang in there! Yeah for 24 weeks, hoping for 16 more!Tracy
- Sep 21, 2007 9:58 PMTiffany,I am glad that you are able to use the resources available in the public schools for Josh!! There are great resources available (and most are not RUDE like this lady was...I personally would not go back to her but request someone else).My daughter also has a processing disorder and I distinctly remember the HOURS of homework....until her & I were near tears and gave up. Those are the nights I wrote the teacher a note and explained why it was not done!!I hope you find the answers you need to help him succeed. It's not something he can control....it is something however that help is available for to make it so much easier on him...and you & Dad!!!Know you are not alone in this struggle. We are always right here!!Hugs!Sharlene
the schedules have begun!
Aug 30, 2007 4:17 AM
School and lessons have begun! Josh started his first day of Kindergarten on Monday. He seemed to like it. I cried when I picked him up because he wanted to stay and play on the toys. He told me that he didn't want to color anymore, just go outside and play on the toys because he needed to get energy. What a boy!
Today was his third day and his teacher says he is doing well. Yesterday he had homework. It was quite a chore, but we got it done. He doesn't enjoy writing or coloring at all. Not only is he a lefty, but with the mild C.P. his hands tire quickly. Practice makes perfect.
I can't believe that we have started the school thing. I feel so old!!! My husband and I now have about 20 years left to take/have kids to/in school...not including college. Josh looked so cute in his little uniform. The first day I picked him up his pants were falling down(slim pants). He had ditched his belt in the bathroom....I guess it was in the way.
Hannah started up ballet again and loved it. She really loves to dance. Her tap shoes are pink this year. My husband took her to get tap shoes for me and he called to asked if pink was o.k. I figured why not? The more girly the better. she did really well in her class.
Hannah also got moved up in her gymnastics class, so she started that new class this week also. She loved that too. They call her Elasti-Girl at gym because she can do both side splits, middle splits and straddles while laying her body on the ground in front of her. She reminds me of a rubberband. She did well and will enjoy this class.
Nate will start his Jui-Jitsu class next week. I ordered the smallest gi I could find. I am afraid it will still be too big. He is very excited to go. After we dropped Josh off at school that first day and we were on the way to Hannah's gym class Nathan said, "I go to Uncle Matt's gym." Even at two he clearly understands that he will get his turn and he wants it!
My husband will start up his Jui-Jitsu classes again next week and then he won't call himself fatty anymore. He really isn't fat. I don't even notice stuff like that, but he notices because it is his body. He loves being active and hasn't been able to with my cerclage issues.
I will do nothing, but grow this baby and drive people around. I really don't mind though, I love to see them having fun and learning. After the baby is born than I can exercise again.
Last night we did something different. My husband put on one of our "Love" C.D.s (one he sent me when we were dating). Then we danced. When we were in college together we took some dance classes together. Our favorite was the Cha Cha and the Swing. We didn't do that last night though. We just slow danced(that is all I can do right now). Then we took turns with each of the kids and danced. They loved it. It was really cute to see Josh and Hannah dancing together.
I will see if my husband can help me post some pictures of the kids. I just can't figure out how to do it on my own. I am so excited for Fall to be here!
Tiffany
Today was his third day and his teacher says he is doing well. Yesterday he had homework. It was quite a chore, but we got it done. He doesn't enjoy writing or coloring at all. Not only is he a lefty, but with the mild C.P. his hands tire quickly. Practice makes perfect.
I can't believe that we have started the school thing. I feel so old!!! My husband and I now have about 20 years left to take/have kids to/in school...not including college. Josh looked so cute in his little uniform. The first day I picked him up his pants were falling down(slim pants). He had ditched his belt in the bathroom....I guess it was in the way.
Hannah started up ballet again and loved it. She really loves to dance. Her tap shoes are pink this year. My husband took her to get tap shoes for me and he called to asked if pink was o.k. I figured why not? The more girly the better. she did really well in her class.
Hannah also got moved up in her gymnastics class, so she started that new class this week also. She loved that too. They call her Elasti-Girl at gym because she can do both side splits, middle splits and straddles while laying her body on the ground in front of her. She reminds me of a rubberband. She did well and will enjoy this class.
Nate will start his Jui-Jitsu class next week. I ordered the smallest gi I could find. I am afraid it will still be too big. He is very excited to go. After we dropped Josh off at school that first day and we were on the way to Hannah's gym class Nathan said, "I go to Uncle Matt's gym." Even at two he clearly understands that he will get his turn and he wants it!
My husband will start up his Jui-Jitsu classes again next week and then he won't call himself fatty anymore. He really isn't fat. I don't even notice stuff like that, but he notices because it is his body. He loves being active and hasn't been able to with my cerclage issues.
I will do nothing, but grow this baby and drive people around. I really don't mind though, I love to see them having fun and learning. After the baby is born than I can exercise again.
Last night we did something different. My husband put on one of our "Love" C.D.s (one he sent me when we were dating). Then we danced. When we were in college together we took some dance classes together. Our favorite was the Cha Cha and the Swing. We didn't do that last night though. We just slow danced(that is all I can do right now). Then we took turns with each of the kids and danced. They loved it. It was really cute to see Josh and Hannah dancing together.
I will see if my husband can help me post some pictures of the kids. I just can't figure out how to do it on my own. I am so excited for Fall to be here!
Tiffany
COMMENTS
- Aug 30, 2007 4:30 AMIt sounds like you all are going great!How sweet that you and your husband take time out for each other like that!Kathryn
- Aug 30, 2007 5:32 AMWow, sounds like you are ALL busy and having a great time at it! Glad Josh liked kindergarten!Shonda
- Aug 30, 2007 10:54 AMIt sounds like you are gearing up for a busy school year. Good luck!!Angi "Phoenix's Mom"
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