Monday, September 6, 2010

End of summer

Today marks the end of summer, traditionally, and for us as well since we just returned from our last summertime camping trip. All our camping for a while now will be cold camping with raging fires and lots of layered clothing. Pools and beaches will be replaced by hiking and fishing. I am so glad that the kids love camping as much as I did when I was young and I dont think they have figured out yet that the reason we go camping so often is that it is the only form of vacation we can afford :) Our next adventure will take us back to North Carolina to a hot air balloon festival and then to a halloween weekend after that back at the beach.

My favorite time of the year is almost here, right around the corning...a chill in the air but not quite cold, kids playing soccer, football on TV, back to school routines and roaring campfires. As much as love summer, fall has always been the best season of the year, marking the end to summer and the beginning of a wonderful extended holiday season. Fall, I love you.

Wednesday, July 28, 2010

I cant believe how long it has been has been over a year since i posted here, that is crazy. I havent been too busy really, i guess it is more of the fact that i have been lazy :p Everytime i think about posting, there are so many things to say that i just cant think of the best way to say everything so therfore i write nothing. It has been quite a year, thats for sure. Elijah passed his 1 year mark living as a type 1 diabetic and i guess now i have to go update his diabetes blog with that info.

So what have we been up to this year?? Caity was diagnosed with Aspergers syndrome this year and we have been working with therapists and doctors to help her learn about her unique way of seeing the world and helping her learn about some basic life skills that will help her succeed in life. There are many additional struggles that we and she face in life and it has been an...adventure. She has been doing well and progressing in gymnastics and has finally decided to get more serious about it. She finally competed as a level 4 and will be moving on tho level 5 this fall.

William is doing quite well in school and has already skipped a grade (one more benefit of homeschooling). He also competed as a level 4 gymnast this year and will be moving up to level 5. He recently broke his arm at he has been in a cast for almost a month now and has been going crazy not being able to do tumbling and stuff at practice. He is in a special program called future stars for young male gymnasts who show extreme promise in the sport. He has been identified as having possible Tourette's syndrome and has several motor and vocal tics that manifest especially when he is tired or anxious. He isn't bothered by them too greatly at this point but is sensitive to people noticing them when he cant control them. We are not seeking any treatment unless they get so bad that he can not deal with it anymore. He has learned ways to mask the tics so far and seems to be coping well.

Nathaniel loves soccer, gymnastics, baseball or just generally jumping around and just finished his first year of public school. He was officially diagnosed with ADHD this year and in addition to his ODD he always keeps us on our toes. He struggled with behavior and academics but managed to pull it out in the end and get promoted, after attending summer school which is currently in and hates !! Hopefully next year will go by without us needing to medicate him, which we really want to avoid if at all possible.

Isabella will be starting kindergarten in the fall and is super excited but a little nervous as well. She has blossomed over the last year mostly due to involvement in dance and gymnastics to help her get more coordinated and relieve some of her hypertonia. She has gotten much stronger and more flexible. She still struggles but not near as much. She is already writing her name and is becoming quite the big sister. She has become an avid gymnast herself this year, progressing from tumble bunnies to a class called hot shots. I worry about her getting picked on in K but she assures me that she will tell me if anyone bullies her :)

Elsie has been accepted into a high risk preschool in the fall, due in part to the fact that she would not speak to the evaluator. She is incredibly shy and we have had a horrible time getting her to venture out an try anything because of it. They call it selective mutism because she talks non stop at home but chooses to be mute at other times. I do see improvements over the years but she has a long way to go. Maybe being at school each day for a few hours will help. She is an incredible athlete, loves running and gymnastics. We finally got her to go to a gymnastics class as long as Elijah went with her and he coaches want to move her up becasue her skills are so advanced but they can not do it because she does not talk to the coaches or participate in the stretching and warm up. Makes me sad to see her miss out on something she is good at because of that.

Elijah is my sweet little man. He is dealing with his disease admirably. It is a hard life to be diabetic at 4 but he sees it as normal now. He is being out shined by his brothers and sisters in many areas at this point but i know he has a special talent out there to be developed. He loves to play with leggos, trucks and his big brothers. He tells me when he grows up he is going to be a monster truck driver!! He has developed a nasty habit of sneaking food, especially sugar, early in the morning so we have had to lock up alot of our food. Now he is climbing up in the cabinets and learning how to get into the fridge and freezer. he is very resourceful!! Unfortunately this can be deadly for him and it does scare me at times.

We are getting ready to go camping this upcoming week and the kids are very excited. I have a feeling by the end of the week we are all going to be sick and tired of the pool!!!

Have a great week!

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. 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 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 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.