Tuesday, March 31, 2009

So many things

I can not even remember all the stuff that has happened since the last time I updated. Life around the Lewis house changes so quickly, it is hard to keep up. Most notably I guess is that Jonathan just left tonight to go to Connecticut for an un-determined period of time. We got a phone call on Friday night from his sister telling us that his grandma was found unconcious on the kitchen floor and had suffered a major stroke. They took her off the ventilator today and have moved her to a hospice room, no hope of recovery, the stroke was just too major. I am praying that he makes it there before she passes so he can say good bye to her.

It was obviously a bad week for grandmas because last week my grandma had a heart attack. She is back home now and recouperating, had 2 stents placed and is back to her spunky self...she did get to ride in a helicopter which was neat for her (she lives on the eastern shore so she got flown to the heart hospital here).

Elijah's diabetes has been massively out of control, check out his diabetes blog for an update. I also ened up taking him to the ER this past weekend becasause I noticed on Friday that he had a huge mass on the side of his neck, about the size of a ping pong ball. The doctor said he thought it was a lymphnode that was fighting off some kind of bacterial infection but he could not figure out which one. His strep test was negative, his throat looked normal, his ears were clear and there were no obvious signs of any infection. They put him on antibiotics and he has 2 days left on those. The swelling is still there, although I think it may finally be shrinking. If it is not down significantly by friday I am supposed to take him back to the doctor so hopefully the antibiotics will work. I have started having anxiety over this darn thing. Especially since he has been having horrible sweating at night and has been feeling like crud...constantly telling me he is tired and wants to go to bed...which is highly unusual for him. I just wish he felt better. He is still as sweet as ever and very clingy to me, guess he is going through a mommy phase :) He an Elsie just celebrated their 3rd birthday along with Isabella and her 4th. It was a makeshift last minute party but they enjoyed themselves.

Isabella has started dance and is really enjoying it. Elsie goes to dance too, but that involves dressing up like Isabella and going to the studio with us and clinging on to me, not speaking to anyone in the waiting room. She has soooo much social anxiety. Although I do feel she is improving somewhat, it is painful for me to watch her be tormented by her anxiety in groups and in social situations. It makes me so sad to hear so many people she knows wonder if she can speak at all. Most people never believe me when I tell them what a chatterbox she is at home. I hate to see her struggling in silence. She wants to participate so badly but then becomes paralyzed with fear and it makes me sad :( These girls are my beautiful princesses and Jonathan is already anticipating all the problems he is going to have in the not-so-distant future with them...they have a piece of his heart for sure :)

Nathaniel has been ...well...Nathaniel. His rages have gotten way worse for some reason. He has ODD (oppositional defiant disorder) and has been having a really difficult time of things. I am not sure why but he had a rage fir for 4 hours on sunday, probably the longest one he has had. As he getss older and stronger, more things get damaged. He has been having 2 or 3 episodes a day and it has become utterly exhausting. I dont know what else to do. His physchologist helps but its not like they can give them some medication to help, behavior modification takes alot of time to work, but it seems to be making everything worse. He is such a sweet boy when he is in a good mood, sometimes he is like a light swtich I just can not figure out what turns him off and on...I think that is the most frustrating part.

Caity has been plugging away at schoolwork. Her ADD is a constant problem and she still has difficulty with her focus and distractibility as well as impulsivity which makes it very difficult for her to make friends. She is advancing quite well in her gymnastics and cheerleading. Three weeks ago she perfected her back handspring and is now working on her double back handspring. She could be even so much farthur than she is right now if her confidence was higher. She has such a defeatest attitude that it makes me feel bad. She is so good at things she really puts her heart and soul into, I wish she could see it more.

William is doing very well in school...he is so smart! He really is quite advanced for his age and I am afraid he will almost be on the same level as Caity in some subjects by the end of next year. Socially...well...school has not been everything I was hoping it would be for him. I basically sent him to school instead of keeping him home with Caity to help him with his social interactions which were severely lacking. Well he has either been in trouble or been witness too it most of the year. He will be starting school at home with Caity this summer. At his checkup the doctor was pleased with his progress and suggested that he did indeed have autism, but that Jonathan and I had done so much for him early on that we have been able to get him to a point now at 6 years old, that he is only coming up as borderline on the testing. That makes me feel very proud as a parent. That even without some crazy diagnosis we were able to recognize his difficulties early on in life and help him learn to adapt to life with a special brain.

So as usual, to summerize our life...things could always be worse than they are and we are so thankful to the Lord for all of the blessings he bestows on us. He is a great God and I will certainly praise him in the sun and in the storm for always remaining faitful to us even when we are not faithful to him.

Thursday, March 26, 2009


for those looking for elijahs diabetes posts, i have a new blog for them, check it out! the link is right here -----> under "my other sites". thanks for the support!

Monday, March 2, 2009

A rare treat!!

I was pleasantly surprised this morning when I looked out my window and my lawn was covered in a blanket of white. SNOW???!!! Wow, hampton roads rarely gets snow any more (at least not enough to cover the ground) and although we were having a storm last night, the weatherman said all the snow was going to be north of us.

Where we live in suffolk we actually got about an inch and it snowed most of the day, which made it a beautiful day indeed.

I grew up in this area and I remember, as a kid, having lots of snow around here. Maybe I just remember it that way cause we rarely got it so it was always memorable, but we definitely got more of it when it did snow. I remember getting 3 feet one time, enough to build a hill in our front yard and go sledding.

I certainly do not like the winter...it wreaks havoc on my hands from my EDS pain, but I do like to watch it fall...and it is nice for the kids to see it once or twice a year. It figures we would make the whole winter without snow and then get some on the 2nd day of March!!!

Well, winter is complete Lord, you can bring on the spring!!!!!

Friday, February 20, 2009

I hate ADHD!!!!

Can I just say that ADHD sucks!!! I do not know what it is like to have it but I do know what it is like to try and parent someone who has it. All of you out there who have an ADHD child know exactly what I am talkin about.

Caity is now 9 years old and has managed to stay off of medication, at the encouragement of her therapist and at my request...I find no need to medicate a child when there are other options. All of the natural solutions have been tried...no sugar, no dyes, lots of sleep, natural supplements, limiting caffeine, giving caffeine...nothing has helped.

So far we have been pretty successful with behavior modification but now we are at a point where there is so much frustration that I feel unfortunately that medication may be our best bet. I have come to see that her inattention and impulsivity is beginning to become a problem...she is loosing friends...hurting herself and hurting others...not because she wants to, just because.

I am also having a hard time figuring out if her learning disability or her ADD is responsible for her serious lag in math skills....she is like a computer that needs to be rebooted every day. She learns something and just when i think she finally understands...the next day it is like we never went over it!!!! The frustration is making me loose my temper with her and I do not want that. I want schoolwork to be fun and enjoyable for her...not something she dreads because she is constantly getting in trouble over it.

I do praise the Lord that she does as well as she does with all of her problems. For someone dealing with PTSD, anxiety, depression, ADHD, and a learning disability she is doing remarkably well...she is a level III gymnast, a competitive cheerleader, reading and spelling on a fifth grade level and very athletic. She is growing up to be a beautiful young lady and I am so thankful to the Lord for letting me be her mommy.

Friday, February 13, 2009

a rollarcoaster ride...not the fun kind!

Wow...this last week or so has been quite an adventure. Elijah's diabetes has become a huge part of everyday life for everyone in the family. It is very easy for me to become totally consumed with controlling it and I have to daily resist the temptation to let it become an obsession. Every day is a constant battle for balance. Using insulin to bring down the highs, sugar to bring up the lows and feed the insulin if he happened to get too much. Making sure he is eating enough but not too much Being sure to constantly check on the level of his blood sugar in order to catch something before a serious complication arises.

As a mother it is very easy to let the thoughts of things that could happen become a source of serious anxiety on an hourly basis. What if he has a seizure in his sleep and I don't know about it. What if he slips into a coma while I am not around. What if I let my guard down for just a minute and I decide to not check him at the right time and I miss something. Just the thought of all of these things wears me out!!!

The last few days has been particularly difficult due to Elijah being sick and possibly entering what is called a honeymoon period in type 1 diabetes where his pancreas, having recovered from the toxic effects of sugar in the blood (it recovers because he is getting insulin from a shot) starts to produce the last remaining bits of insulin as the remainder of his pancreatic cells are destroyed. This combination causes severe hypoglycemia which is life threatening, especially at his age. The scary part is that there is no predictable time frame and he could go into diabetic ketoacidosis again without warning.

Fortunately he has gotten by with skipping a shot every now and then but it requires lots more blood sugar checks, some times as many as 1 every 15 minutes, constant monitoring for symptoms and feeding the lows with sugar which sometimes he refuses to eat.

Although this has been and will always be a struggle for him and for our family, the Lord has blessed us extravagantly and does so on a daily basis. We realize that his disease could be so much worse. Please remember to say a prayer for all of those families out there dealing with chronic diseases and children with special needs.

Thanks and God bless.

Friday, February 6, 2009

Is this a joke???

Tuesday January 27th started out like any other ordinary day but it would end up being the day that changed the life of our family forever.

Elijah had a doctors appointment that I had been putting off for a while. I really did not want to take him in because I knew they would tell me the same thing they always tell me when one of my children is sick..."he has a virus." He had been complaining of a stomach ache and started wetting the bed about 10 days prior to that tuesday. He seemed to be soaking through his diapers quite frequently and seemed to be really thirsty and hungry but he has growth spurts and since he had gotten really skinny I figured he was in a spurt and maybe he had a UTI which was making him pee alot. So I finally got around to getting him an appointment and after a very long wait on a busy day at the doctor we were seen.

While we waited in the office he drank about 40 ounces of water!!! The nurse had not any sooner put on the little urine bag than he had filled it up and overflowed. He had been a little cranky and more lethargic than usual but I thought he was just not getting enough sleep. When the doctor finally came in the room (they had already done the urine sample) I could tell something was wrong. She asked me what had been going on so I told his story and then she told me his urine was abnormal. She said his sugar reading was 1000+. Being a medical person I knew what that meant and my heart sank...I replied to her..."WHAT??? are you kidding me...I thought he had a virus."

She said "He has diabetes...type 1 diabetes, he is very sick, its a good thing you brought him in" and then told us we were going to the hospital and she had to call the insurance company to see where they wanted us to go. In the meantime the nurse came in a checked his blood...of course the machine just read HI both times. She called the insurance company and then the enocrinologist to let him know we were coming. She let me drive him as long as I promised to go straight to the hospital with no stops. So off we went to the ER.

They took us right back and tortured him with the IVS and catheters, etc. His blood sugar I think was over 700 but no one ever told me exactly just that it was really high. He was started on an insulin drip and some other things to get his sugar down, treat his acidosis and rehydrate him. Eventually he fell asleep. The doctors told me that if I had waited a day or 2 more he would have ended up in the ICU much sicker than he was already...what a horrible mother I felt like, knowing that I almost did not make that appointment for him.

He had been through so much that day that he finally passed out, all of the fighting and screaming wore him out. Of course he woke up in the elevator as we were moving upstairs where he proceeded to have a horrific temper tantrum for the next 45 minutes while the nurse and doctor tried to talk to me (the doctor fianlly gave up and told me he would come back--smart man).

He settled down eventually once the TV was on. Then I look up and the nurse comes in and gives me a calculator. HUH??? She started talking to me about diabetes with graphs and then started doing calculations on the dry erase board...calculations...are you kidding me...my kid just got diagnosed with this lifelong chronic illness that could kill him and you want to teach me math??!!

She told me I needed to do all of his carb calculations and tell her how much insulin he needs...what...isnt that what the nurse is for??

I soon figured out that with Type 1 diabetes, the moment you or your child gets diagnosed, your life is different forever. There is no grace period with diabetes. No time to digest the information or the impact it is going to have on your life, the life of your child and the life of your family. You are forced into learning a whole new set of rules from the moment of diagnosis. Within 12 hours of his diagnosis I had 3 books on diabetes, a new calculator, a record sheet and a pen and then I was off...calculating carbs, calculating insulin, learning about adjustments and how to treat hypglycemia, hyperglycemia, how to deal with birthday parties, sporting events, playing at the park, etc.

The information is totally overwhelming...I can not imagine having no medical background and having a child get this diagnosis. There is no room for on the job training. If you give too much insulin, your child could DIE, if you do not give insulin your child could DIE. Those thoughts are very scary and anxiety provoking.

The first 2 days in the hospital, Elijah would have a huge temper tantrum everytime he had to get his sugar checked or have a shot of insulin...it was awful. I was totally exhausted from restraining him and keeping him from pulling out his stupid IV. After that it got a little bit better. We were kicked out after 3 days because they needed the bed and off we went, with a giant box of supplies and meds, 4 emergency phone numbers and alot of anxiety.

We have been home a week and life has been...different...He has good days and bad, but things fluctuate by the hour. Jonathan and I are learning as we go, not that we have a choice. He has highs that have made him sick and lows that have come close to being life threatneing but fotunately no major incidents. Toddlers are ecspecially hard to treat and have lots of variations so we have had to make several changes to his medications so far.

Alot of people do not understand what life with a diabetic child is like...some people do, those with chroniclly ill children can understand what it means to provide constant care to a young child. Everyday my heart is broken because I hate to see him cry and I am running out of unbruised places to stick him. I hate when I have to drag him out from under a table and hear him wimper that he does not want it to hurt. I hate the fact that he does not understand why he gets poked by sharp things at least 13 times a day.

I have not been able to write about this until now because everytime I try to I cry, sometimes about how much damage could have been done if I had waited, sometimes about the thought of what can happen to him if I let my guard down, sometimes I just cry knowing that he will deal with this his whole life and the complications he may face in a few years.

It has been a rough week but as usual God has been so good to us. He protected Elijah, gave me the wisdom to know that he needed to go to the doctor (eventhough I thought they would tell me he had a virus :), He gave us a great endocrinologist who stays in daily contact with us and has kept Elijah safe from seizures so far. We are blessed that our little boy is alive and that he does not have something worse than diabetes...it can always be worse.

Thank you God for your perfect plans.

There is so much to say...I have still not entirely digested everything but I can not write anymore right now...too emotional. Everyday gets a little easier so I will write again soon.