I wrote the following in 2010. I want to put it here so that I have it always. It has some typos but it is still part of our history.

Jake's story

By Marcie Green Reynolds on Tuesday, November 16, 2010 at 9:33am

Jacob’s birth was pretty normal, they put him on my chest (I’d begged them to let me hold him

just in case they had to take him away, my older child had been born not breathing and they took

her away and my husband finally remembered to come back and tell me she was okay a few

hours later) and then they took him to look him over. I had Group B Strep with both of the older

kids and Jake ended up having a low body temp. A new student was left to clean me up and pull

out my epidural. He pulled without having me bend forward and it hurt! He went to find out why

it wouldn’t come out and came back and did it correctly. Then he freaked when he realized I’d

lost a pail full of blood. I felt a bit weak but was able to walk to the restroom and back. For 45

minutes I waited and then they brought Jake back to me. The next morning we had him

circumcised and it wouldn’t stop bleeding. They tried epinephrine and a chemical cauterization

and sent us home that afternoon. His body temperature kept dropping even though I was

kangarooing him, my body wasn’t creating enough heat. My sister lived in the same complex

and came to hold him; she was so warm and toasty that his temp went back up to normal. After

several bloody diapers we too him back to the ER. They did a hematacrit and another

epinephrine wrap which he soiled by the time we got home. In the morning we took him to the

Pediatrician who tried chemical cauterization again and sent us home. The next 24 hours was

horrible, he had so many bloody diapers and we took him back to the pediatrician who said we

should go to Children’s Hospital immediately, and warned us that we may not make it in time.

We got there and they asked to take blood to test him for something, I didn’t want to let them

take any more blood because I thought it would kill him. They drew the blood and then gave him

a transfusion. After some time they came in and told us he had hemophilia. I assumed it was

something that they could treat and we would go home and live a normal life, they informed me

that wasn’t the case. I asked if we needed to pad the whole house, they explained he could be a

normal boy with medication but we should avoid some sports. He spent roughly 36 hours at

Children’s and was able to go home on Christmas Eve with an IV line in his foot. When I tried to

give him factor on Christmas morning it was clogged. We took him back to the ER and they put

a line in his head. They were so upset when they realized what he had because they knew another

family that came in for treatments but it had never occurred to them, and we almost lost him.

From that point on he only went to Children’s Hospital. At 10 months old he had had 3 CT scans

and been treated 4 times. We probably didn’t need to treat any of those times but we were

freaked over every little thing and they wanted us to be kept at ease. After the last time he had 10

pokes by 6 different nurses they decided he needed a port. We got the port, I learned how to

infuse when the lady came to remove the line a week later and I’ve been doing it every since. He

got his first bleed at 15 month in his right ankle from falling on his medical alert bracelet and we

started prophy. We put him in a daycare and showed them how to put his diaper on without

pressing on his hip, using their fingers inside the diaper to press the Velcro or tape together. The

younger teacher kept doing it wrong and then saw a bruise develop and said there was no reason

for a child to have a bruise in that area, she told her boss to call CPS, her boss showed her

Laurie’s book that we had given her and she still wanted to call CPS so they fired her and let us

know to expect a call from CPS. It never came. Throughout the years we have had other

diagnosises, they thought he had Aspergers and after a few years we found out it wasn’t

Aspergers but he is learning disabled. He has several sensory processing issues. The one that

scares teachers is his need to throw himself down on the ground to feel pressure. They started

refusing to let him go out to recess. We made them let him go out and explained we treated him

every other day and he was normal. They ended up having an aide follow him around. He

repeated 1st grade and by the end of 2nd grade we were getting nowhere. His teacher informed

me that he did well one on one but she would lose him when she went back to the class. I’d been

having bleeding issues of my own and he’d missed several days of school so they wanted to

report us, my daughter’s school was going to report us for the days she’d missed due to her cycle

and I just got fed up and started looking for information on homeschooling. I found a public

school charter that paid for everything and provided a teacher to be available to field my

questions through email or over the phone; they would even provide OT services. I signed us up

and we started the next fall. That port has lasted us for 11 years and Jake will be 12 in December.

He has two target joints, the right ankle and his left elbow. I have gone through 5 miscarriages,

one of which were twins and finally had my son Ethan who does not have hemophilia. During

that time I’ve failed Jacob several times and sometimes that resulted in a bleed. When he was

little if I took a week or two off it was no big deal but these last few years if he doesn’t get

prophy, 50% of the time he will get a bleed. I’d love for him to learn how to infuse himself but

even the home health nurse who has 30 years experience can hit his veins every time. We are

working on the tricks shared with us through this site and hopefully I will get him to let me poke

him again soon. I’m sure I missed a ton of stuff but this is long enough as it is. Thanks for

reading if you did.

Two years have passed and so much has changed. I'm working full time, Jon has just started back to work after 14 months of unemployment, 7 of which were not covered by unemployment insurance. Our oldest child has graduated from High School and our middle child is starting High School, our youngest going into 2nd grade. I am more in love with my husband today than I was 19 years ago when we were so newly expecting our first child that we didn't know yet.

I am 39 years old and finally starting to feel like a for real grown up. Having an 18 year old going through that not so fun stage of thinking they know everything and have all the answers reminds me of how much I thought I knew, and makes me realize just how little I actually understood life. I keep hoping that I can cut her off at the pass and help her avoid so much pain, but she is dead set of running full speed for the cliff. So, I've reached an understanding, that it's my job to be here to kiss the boo boos when she falls, but not necessarily to stop her from falling. I just hope that I've taught her enough that she will pedal fast and strong and not fall down.

I've decided to turn my focus inward and instead of criticizing myself as I tend to do, I'm making another plan. I like to make plans, but I hate change and so I get scared and don't follow through. I keep reading things that basically say, if you don't like your life, change it. Easier said than done, I always think to myself, but this time, I will make changes. So my goal is to get from 229lbs down to 170. My mom has much less to lose than I do, but the first one to reach our goal will receive $100 from the other. I'm hoping this will motivate me to get up in the mornings and do a walk away the pounds video, or think twice about what I eat or even go to the gym some evenings after work (we've paid for it but not used it for far too long). I'm also working on raising our credit scores by 100 points and saving to buy a home. This one is going to be tough because we have so far to go, but I'm going to take baby steps and get there. Lastly, I'm going to work on making the place we live into a home that I can be proud to invite people in to visit. I have no decor sense and our furniture has been abused but I am going to make definite steps toward to fixing that.

Lastly, I plan to take more time to be the me I want to be, not just by weight and clothing and care of myself, but the mom and wife that makes me feel good about myself. I want to take more time for reading and writing, but I can't do that if I don't unclutter my life in so many other ways. I'm a work in progress and my life is still busy, maybe even more busy than it was before, but all in all, it's a good life.

Staying on track

This weekend I managed to mostly stay on track with our finances. There were a few blips, like the tire that I cut by running into the curb...embarrassing enough when I did it in front of the kids at Cyndi's high school, even worse when I had to take it to get fixed. I let Jon do all the talking and tell about his wife making the mistake while I sat outside on a bench reading a book. Then we went to the store for a couple of things and remembered that we owed someone a birthday present so between those two things we spent about $45 that we weren't expecting to. All in all not bad compared to last weekend's straying from the budget. I did get my checkbook to balance, I was so stressed because I couldn't figure it out, I mean who is going to want to hire me as an Accountant some day when I ever finish college if I can't even balance my own checkbook? Turns out I had double entered two items so I found them and now I feel so much better.

Ethan and I had a much better weekend, he seems to be doing better for the most part as long as we keep his attention meter filled. I need to call and set up an appointment to have him tested for ADHD. I'm hoping they will say that all the people who think he has it are wrong and we just need to do X, Y, and Z and he'll be fine. *sigh*

I've spent far too much time online today. Zombie Lane and Castleville are my weaknesses and now I've found this House M.D. game. Oi! I promised myself only two games and even then I end up playing too long so I will have to cut one out. I can do this! Well, I need to leave in less than an hour to take Ethan to the park before I start running around so I'd better sign off and do a mad dash to make it look like I did something today. I have Summer fever big time lately. Have a great week!

Slacker!

Eek! Where has the time gone? I haven't been posting lately. The days are starting to run together. It is almost Summer and we are going to take time to stop and smell the roses. We will be at the beach every Friday possible with a dear friend. We will try to visit the dollar movies at theaters on Tuesdays and Wednesdays. They play movies that are already on DVD but it will get us out of the heat and help my five year old son get used to movie theaters and get us out of the house. Mondays and Thursdays should find us at Knott's using our Season Passes. We will have an extra member in our family starting next week. My daughter's friend is moving in. She is 18 and graduating high school. She is already like a member of the family and really brings out the best in my children. I am so blessed to have her. She helps me see things in a way that I might not have thought of and when she suggests my children do something, they do it without feeling like mama is nagging them. I always wanted another daughter, I now I basically have one. You should have seen the girls getting ready for Prom this last weekend. We had so much fun getting their nails and hair and make up done. I added a picture, Daisy is in the white dress and my daughter Cyndi is next to her in the burgundy.

We have been working on cutting out sugars and we have all lost a bit of weight. It feels good to be on the right track, going to the gym and eating healthier. I still haven't fully implemented the Dave Ramsey system but we are doing better with our finances. I will start classes again at the local college in August. I am hoping to finish my Transfer degree at the end of next May. Then I can apply for a spot at the university that I plan to attend. Well, that's about it...you are basically caught up!

What is a good parent?

I've always considered myself a good mother. I love my children, I do all that I can for them, I put them first and I do my best. Am I the best mother? Not even close, but I still consider myself a good mother. I doubt that others see me as such. I am that mom who freezes when we are in public and my son has a meltdown. I am that mom who has a five year old that still poops his pants and I am that mom who has said yes more times than is healthy. I'm working on improving myself and my parenting. I'm always trying to do better. I can't focus on the guilt of what I have done wrong, but I can learn from it. The goal being to raise healthy, confident, independent and happy children into adulthood. My children are in different stages but I see their growth. Such amazing and beautiful growth. My daughter is blossoming into a lovely young woman who makes me proud daily. My middle child, my oldest son is starting to do things he never would have attempted before and it's a joy to watch him accomplish things he didn't think he could...like not one but two As in a row on math tests. The youngest has me worried as he is so very stubborn, but I have moments of hope like when he goes to the toilet or uses his manners and smiles and is so sweet. I'm going to keep doing my best and loving my children. I will never receive a mother of the year award, but my children will know that I love them.

Relaxing and giving myself a break, and yet I'm still super busy

I've been giving myself permission to read books again. I've missed taking a little time out to relax and read a book. It really does recharge me. I'm spending less time on Facebook and more time on the house and still having time to read. Facebook really sucks away my time.

As for our doggie, Sandy, she was very ill last week. It seems she'd gotten roundworms while living in her prior home. She's feeling much better now. She still doesn't like dog food or dog treats though. We have a list on our fridge of what human foods she can have and she gets so excited when she gets a bit of flour tortilla or cheese or bread. I gave her a bit of Jon's sandwich ham but it's salty so I have to limit it. She LOVED that.

One of my biggest struggles right now is my five year old. He continues to fight me on the potty training. He just won't do #2 in the toilet. His pediatrician calls it potty training resistance, but not one of the tips on the paper he gave me have helped. We've tried rewards and he decides the rewards aren't worth it, and going the opposite was not working at all either, as he'd take the punishment and go right back to it. My mother in law has tried twice to sit with him in the bathroom with him on the toilet, for an hour! He got off the toilet and then went in his pants not long after. He's supposed to start Kindergarten in the Fall, I really hope we can get this resolved before then.

I also checked our credit report and scores, which are both improving. That's nice to see but it looks like I'll need to pay off some student loans in order to get my debt ratio where we want it.

Oops, just remembered that I am supposed to take something to Cyndi's school. I'd better get to it.

I'm still here

We added a doggie to our family last week. She's a rescue, five years old and a sweet little chihuahua. She's not fixed, and is in heat right now. I feel so bad for her, she has no appetite and she just wants to lay around. We named her Sandy...like the doggie in the movie "Annie". Ethan thinks her name is Cutie and refuses to call her Sandy. She was only 3.9 pounds when we got her, she's gained half a pound so far in the week and a half we have had her.

We drove from Long Beach, CA to Tuscon, AZ and back in one day. One very long day full of many, many, many stops. All in all it was a good trip.

We are making progress on getting the house more organized. I wish I was naturally a clean freak but that's like wishing I was thin...it'll never happen if I don't put the work in to make it happen, so I'm working on it. I do see a lot of improvement, especially if I look back to the years where I would never let someone in my house. Now we can have people over and it takes maybe half an hour to get it all pretty...less if everyone helps.

Financially, we still have a lot of debt but we do have a bit of a savings safety net and I paid Jon's union dues and our car insurance through June. It feels good to be making progress.

I'm trying to keep a more positive outlook on life. Things are good, and it's not fair to anyone if I'm moody all the time.

Cyndi is doing Scuba, I'm so excited for her. What an adventure! She had a friend over for a movie after school today, I hope that happens more often.

Jacob is doing better in school. He has reached a reading level equal to his grade level. He ran into friends at Knott's last weekend and we let him go off with them for an hour and a half. He did really well, except for helping the girl he likes buy a gift for a boy she likes at school...but we won't mention that to daddy. ;)

Ethan is so funny and he gets my sense of humor...but I'd love it if he'd stop picking on his siblings...his OLDER siblings, who he makes cry.

The company Jon works for went under so he's working for a new company, but still doing the same job, another company just took over the crews and job. He's getting less hours but at least he's still working full time.

Well...that's about it. I'll try to write more often.