Tuesday, October 9, 2012

School days = germs and BUGS

So our household has a pretty darn tight routine down regarding school now. We wake up at 6:15. Mommy has to pump milk for the baby while Ava showers and dresses. By 7:15am I have all the kid dressed and fed in some form. Andrew usually only takes pediasure. Jacob hooked to his tube feeding and meds, Hannah has a bottle of breast milk, and Ava eats chicken nuggets or pancake and sausage on a stick almost every morning. LOL I load all 4 children into the car and drop Ava off at school 2 minutes down the road. I come back home unload 3 children. I finish getting the boys ready for school, shoes, socks, DAFOs, and hand braces. I get Jacob into his wheel chair and wait for the bus while I pump some more. After the boys are off to school it is just Hannah and me. I usually take advantage of some major nap time lasting into the early afternoon hours with Hannah and get near nothing done. Of course the days that Jack is not working I have help. He gets up with me and takes Ava to school, helps with the boys and usually takes them out to the bus.

Since school has started we have had 3 rounds or respiratory infections requiring antibiotics for all 4 children once. Andrew just got a 2nd round of antibiotics today for a double ear infection. My children have never had more fevers in such a short time in their lives since school has started. Ava brings it home and Andrew licks everything at school. Jacob, for the most part has been spared from the worst of it. Thank God. Ava brought home some critters in her hair about 2 weeks ago....and she had them for at least a week before I found them. I have not had to deal with head lice since I was in middle school. I DO NOT look forward to this happening to me again

So here is the story. I notices her digging at her head towards the beginning of the week. I checked her hair a few time and seen NOTHING. I checked her hair probably 15 times just spot checking it. So, she was really digging her head Friday almost 2 week ago. I even wrote a FB post about how she was digging like she had lice and I didn't see them. I covered her head with baby oil gel just to see what happened with the itching. About 3 hours later I took her into the bath tub to wash it out. As I was looking I seen something that caught my eye. I pull it out. It is dead. A nasty ADULT SIZE louse. I check her head some more and I find FIVE lice right off the bat. I also notice HUNDREDS of nits! I freak out. I'm panicking. I'm now itching my head. Everything I found was dead from the gel I assume. I get dressed and drive in full panic mode to the nearest drug store. I buy nearly $50 worth of suggestions to un-infest my house (thank God it was payday week). Jack is now in full on clean mode vacuuming, laundry, stripping beds. We treated everyone's head and I spent several hours going though her hair. I found a total of FOURTEEN lice. I do believe we treated our heads way more than the recommend amount of time of the course of the weekend using RID and dog shampoo LOL. I took her back to school that following Monday with a clean head. I combed my own head over and over again and have not found anything. My sister found a few nits when she checked. I will forever be paranoid to get my hair cut that they will find nits in my hair. I have treated and combed my head almost every other day. I'm sure this can not be good for me. I have had several people check my head and find nothing. I SWEAR I FEEL THEM CRAWLING. I will now forever be scared about head lice infesting my house again.

I recently went to parent teacher meetings for both boys discussing where they are developmentally. Jacob was 1st. I was surprised she score him where she did. Physically he is 2-4 months which I expected and knew. I assume cognitively he was about the same, but she described him as 9-12 months in some areas because the way he distinguishes mainly sounds and how he responds. The fact that he recognizes and show delight mainly to Mickey Mouse Club House. They have some pretty ambiguous goals for him. I hope they can help find the key to unlock some of his potential.

I was surprised how low Andrew scored in some of his testing. Some areas were as low as 24 months and other around 30 which is about what I expected. We are meeting to write a new IEP for him on Thursday. The boys are currently almost 39 month. Andrew has a lot of behavior problems and impulse control issues at school. He rarely eats food and is near dependent on pediasure to keep his weight up which reminds me that I did not blog about the boys 3 year old well visits Jacob 33lbs and 38.5 inches...his weight was up 6 pounds since his nissen fundoplication surgery on July 5th. He was in the 50% for his weight and no longer considered failure to thrive. His GI doctor actually cut his calories back. Andrew weighed in at 30lbs in the 25% and 37 inches. We discussed my concerns about Andrew having a possible sensory issue that we plan to test for at school. We got referrals for occupational and speech therapy for feeding for him.

Hannah is a happy very laid back baby. Andrew was to, so I'm very worried about what the future will bring for her personality, because Andrew is BAD. LOL Her last weight over a month ago was 15lbs 4oz and 26 inches. She turned 5 months old yesterday. She coos, laughs, smiles, grabs and reaches for things now. She turns herself in circles on the floor and rolls to her back and to her stomach now.

Ava is doing well in school. She never gets in trouble. We fight over homework time almost every night. She is learning sight words, working on hand writing, and numbers, and basic math. She had her kindergarten school pictures today. I can't wait to see them. She is on synthroid for hashimoto's thyroiditis. We both have this and take medication for it. She is really good at taking the pill everyday. She is still over weight, but I notice she is not begging for food as much as she used to. I'm hoping she maintains and eventually evens out. She is about 55lbs now at 5 years 4 months. We of course all need to work on healthier eating habits.

Sorry if I'm repeating anything I wrote about before. I feel like I have not really caught up the blog in a long time especially since Hannah was born. I have been keeping records for Jacob and Hannah on their own blogs and everyone else kinda gets left out which also reminds me about 2 weeks ago Jacob had another round of phenol and botox injections in his legs. his left leg abductor is to loose and his leg rotates out pretty bad. His hamstrings are still slightly tight, but he sits with his legs spread apart now and has much better range.

There are some GREAT groups of parents on facebook that have created large groups with thousands of member to trade, buy, donate, and sell medical equipment from dressing changes, g-tube supplies, and large pieces of durable medical equipment. I have been able to snag a few pieces of equipment pretty cheap considering the cost of new. Today his Convaid Easy Rider wheel chair stroller came in for the cost of a $100 "donation" and $25 for shipping. I also got a special tomato seat liner for $65 including shipping which I really didn't need in the end and plan to resell for what I paid. I bought it to go inside his stroller, but I also bought a pretty neat little product called a Snuggin Go Too body positioner for his chair that works great. I am going to review them more on his blog later at www.sqcp.blogspot.com.

We have had quite a time adjusting to 1 income. I can't believe it has been 5 months since I left my job already. We were able to pay off our car to save us a huge car payment and Jacob gets some SSI but not the full amount, but itsure does help. I make sure I put some in his money in his savings and always look for things to help him every month. We live on pennies compared to before. It was a struggle having to pay for all of Jacob's medical cost before on my insurance plan when I worked. Jack's insurance is way worse with higher costs, so if I went back to work we would loose SSI and his medicaid again. If I worked full time I would have to find after school care more than likely for the children and daycare for Hannah. Assuming Jack's insurance stayed the main insurance we would still be in the same hole we are now after child care and medical costs. I feel lost. If I work PRN on the days Jack is home we would still loose SSI and loose the benefit of his medicaid to cover the cost of what the private insurance does not cover. I feel like I am stuck and I can't move forward. I love staying home with my children, but we actually have a low enough income to qualify for food stamps without the SSI. With the SSI we qualify for nothing. It is a struggle to make ends meet, but we are doing okay. I have learned to eat at home and cook more. We do free things more often. Overall, it is good for us. We are eating less fast food and have been more active. It has been a hard adjustment for me to fee like I had no money before to really having hardly any money left over now. I have learned to plan and have already started planning and buying for Christmas so my children can have a nice Christmas. I have actually started doing Swag Bucks. I started on my birthday (9/26) and have already earn $25 worth of amazon.com gift cards. I should have enough to get another $5 gift card by tomorrow. My goal being to make enough over the next month 1/2 to help toward the cost of a Kindle Fire for my children for Christmas. Ambitious I know, but I have a lot of time on my hands when I am pumping.

This brings me to my next topic: Breast feeding. Hannah is just like the rest of my children. She has not, and will not actually breast feed still, so my Ameda Elite pump I have had since Ava was born has been my daily companion. I was very worried I would loose my milk supply like I have with previous births. Ava it dropped around 4-6 months and was nothing by 9-10 months. The boys it was gone by the time Logan died at 6 1/2 months. So far I am happy to report I happily over produce by nearly double what I need. i spend about $50 a month in breast milk storage bags, but I have been able to donate at least 1500oz of breast milk to another mother who does not produce enough for her twins. It may be more than that. I have donated all of June and July's milk to her and she is about to get August milk for lack of space in TWO deep freezers that are full to the top. May's milk was in the expensive little storage bottles, so I am actually still working on going through May's milk once a day with Hannah.

Depression has been up and down with Jack and I both. It is hard for me with the breast feeding and lack of health insurance to do anything about it. Some days I am okay, others I don't want to get out of bed. I have no energy most of the time and force myself to get up and do things. Jack has been working hard and does his best to help me. He really is a great husband and a wonderful husband even though I give him a hard time...he is still crazy though. Anyone that know him know this already and we all love and accept him. :-) LOL He is working on loosing weigh (as I should be and haven't) and has lost close to 20lbs now and sees a weight loss and also now his primary doctor every few months. The medical bill between him and Ava are piling up at the clinic they go to. INCOME TAX can't come soon enough. There just isn't enough money to go around to pay all these extra bills. We are about to cut our cell phone back to prepaid services soon to help save.

I know the new year is months away, but that is the one thing that keeps my mind going forward financially is to get ahead a little at tax time. I have borrowed from my children's saving accounts and need to replace it. We owe Jack's parents a large amount of money for a pluming bill they covered for us. We need some money put away for emergencies and just maybe IF there is anything left we desperately need a new couch. It is broken, smelly, and has holes. Jack is the HOA president  in our subdivision and I told him he needed to find another house to host the meeting at because I don't want someone to come sit on our smelly broken furniture. I hoped to buy a wheel chair van between income tax time and possibly selling our car. I just don't think it will happen for us this year and I don't expect to get a huge return. I will probably have to pay penalties for taking out my 401K early when i left my job to pay the car off. Which bring me to my last subject I think...I have plans to go down to the local Center for Independent Living and fill out there paper work to get help with installing a hitch and wheel chair lift on the back of our van for Jacob's wheel chair and possible help with some tiny modifications inside to make it easier to get his chair in and out of the house. I hope to do it this Friday and get all the paperwork done.

One last thing. Outside of my excitement for the new stroller which will help with short term transport for Jacob we have parts on order to get his main wheel chair fitting him better. He basically only uses the big 60+ pound wheel chair at school and bus transport. The stroller will be great since it is only around 20lbs and folds umbrella style for doctors appointment and places I don't need a double stroller with the other children. We have several things we use for restaurants and friends and families houses. The stroller may replace all that other equipment we have used for seating for him.

Thanks for reading my long update. Hope I did not forget anything and I hope to keep better records for my children in the future. I'm only 2 years behind printing my blog for them now. Oy!

I miss my Logan everyday. July to January is harder months. I think about what he was doing when he was alieve and breathing this time 2009. It take a lot for me not to go back and reread my own words. I had so much hope and faith that he was going to live then. I lived in denial that Jacob was really going to be THIS disabled etc. I feel like my heart has been ripped out and stepped on when I go back and read it knowing how it has all turned out now.

Grief is like a ball of string, you start at one end and wind. Then the ball slips through your fingers and rolls across the floor. Some of your work is undone but not all. You pick it up and start over again,but you never have to begin again at the end of the string. The ball never completely unwinds. You’ve made some progress. -Author Unknown
♥ ♥ ♥ ʚϊɞ ♥ ♥ ♥
  “Life is not the way it’s supposed to be… It’s the way it is… The way we cope with it, is what makes the difference.”
  ♥ ♥ ♥ ʚϊɞ ♥ ♥ ♥
The new Convaid chair with the Snuggin Go Too behind himsee that crazy left leg doing it's own thing. The face was from the flash on the camera LOl

Andrew after school one day with his "prize" for being good at school.

I made Ava sleep like this before I got all the nits out of her hair...my head itches looking at this picture

The new fall flowers for Logan's grave 5 branches of those red ball things for each one of out children and 3 butterflies for each one of our triplets

Ava took this picture at our Saturday picnic a few weeks ago.

We visited daddy at work durinf his lunch time for our picnic

me putting on makeup for the 1st time in years

Andrew is Ava's "doll" she painted his nails pink, gave him pony panties and a nice sponge bob night gown. Andrew was extremely happy about it.

I LOVE dressing Ava up in her little school uniforms!

Jacob sitting up at Shriner's. Don't let the picture fool you. he sat like this for about 4.5 seconds before falling over, but 4.5 seconds is better than nothing. He is wearing all his daily hardwear.

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