I Have A Plan!

 I don't have my Christmas Pictures loaded but here are some Halloween Pictures!

Bei was able to carve the entire face with a butter knife.  He was so proud of himself!





 

The week leading up to Christmas was HE double hockey sticks.   If I didn't know better I would almost think I was going through a hazing week in college.   Each day brought a new obstacle to face.   It started out last Saturday night with Kai having multiple Grand Mal Seizures and eventually being transported to the hospital by Ambulance on Sunday morning.   He was just wiped after the seizures and there was no way he could go to school for most of the week.   His poor little brain needed a good rest.   On Tuesday, Bei and I pulled an "all nighter", my normally healthy kid spent the night throwing up and could not go to school on Wednesday.  This is the week leading up to Christmas where we are having 20 people over for dinner on Christmas Eve.   My house needed a good cleaning, all the presents needed to be purchased, grocery shopping needed to be completed, there was a lot of work that needed to be done.  Dan told me multiple times to get our former housekeeper to come and clean the house, however, I kept telling him "I have a plan!"   It really was two fold, I don't like people in my house when I am dealing with sick kids and I really thought that I could pull it all off.    Thursday rolled around and I finally can get both kids off to school and here is where "my plan" goes into action.   EXCEPT...I end up driving off the edge of my driveway and into a snow bank where I then have to spend hours digging myself out.  I finally dig myself out to find out I have locked myself out of my house...there goes my plan for the day!!!  While picking up Bei at school that same day one of the mom's asked if I was stressed about having Christmas Eve dinner and I said "Nah, I am a type C- personality.  What gets done, gets done...I don't worry about the rest."  Oh yeah, I am a big talker like that, thinking I am all cool and not stressed.   Thursday night Dan pretty much begged me to call our former cleaning lady...but I still believe in "my plan."   Friday is going to be a big day for me and I am going to be extremely productive in cleaning the house, buying all the presents and going grocery shopping...all in the 2.5 hours I have in the morning without Kai.   I wake up Friday morning to literally a fire in my belly...I don't feel well.   Last year I was diagnosed with something like a stomach ulcer.   Even though I am not nervous on the outside my inside is screaming "FOOL!!  YOUR PLAN IS FAILING!!!   On top of my own illness, Kai's school calls me after he has been there for only an hour to tell me that they think he has Thrush (he doesn't) and they want me to come pick him up.   The day was shot and I was still not feeling well. 

 

 

 

 

 Then finally on Saturday my week took a turn for the better, because my mom flew in from Chicago to spend Christmas with us.   Even though I am close to 50 years old I still need my mom!!!   And like mom's do she made everything right.   She worked her tail off!   We cleaned, we cooked and we cleaned some more.   She played with the kids while I cleaned and then I played with the kids while she cleaned.  She wrapped every single one of the kids presents like a professional while I put the bows on them.   She was amazing!!!   She was a cooking machine and she is a great cook!!!  We were able to pull out Christmas Eve dinner for 20+ people with an immaculately cleaned house and had lots and lots of presents under the tree for the kids on Christmas morning.   I don't know why everybody was so worried...I had a plan...

 

Theratog

Kai in his Theratog suit that goes under his clothes

My brother Nick recently picked us up from the airport when we flew in for a family visit.   The first thing he said was "oh my gosh, he is normal!"   It was music to my ears!!  He was referring to Kai's walking ability.   Remember how I would describe Kai as walking around like a drunken sailor.   In October Kai started to wear his Theratog on a daily basis.   It has made a tremendous difference in his balance and motor planning.   The purpose of the suit is to provide a level of pressure to the skin that you and I take for granted, so that he is aware of where his body is in relation to the wall, floor and other objects.   It also forces him to use his muscles in the correct way, which helps the brain to know what to do when he doesn't have it on.  Currently, Kai is wearing the Theratog from 9:00 in the morning until about 3:00 p.m.   He wears it under his clothes and really seems to like it. Another therapy tool that we recently started to use is called a weighted blanket.   You can buy them on line for hundreds of dollars but my therapy facility has a woman that makes them for $35.00.   She sews 6 pockets into a blanket and then fills popcorn kernels into ziplock bags that then go into the pockets.   When we need to wash the blanket we remove the baggies of kernels and we can throw the blanket in the wash.   I put it on Kai at night to help him sleep and he loves it!   Once again it is giving him a pressure that is calming to the body and it provides him a sense of where his body is in space.  I am learning so much about his neurological issues and I am very hopeful that he can work through much of it.

Currently Kai consistently signs 15 words.   Giving him a voice through sign language has really opened up a new world for him.   He can now tell me when he is hurt, thirsty, hungry and when he wants things on or off.   Recently he learned the sign for yes and I didn't realize how empowering the word "yes" can be.  Before if I asked him a question and he wanted to say yes, he would just look at me.   I would have to guess that yes, he wants to do it.   But now, he readily shakes his hand yes when he wants things.   It makes life so much easier for the both of us.   He can sign the ABC's to the letter G and is signing up to the number 10.   This week he learned the sign for family.   He will point to Dan and he will spit a "d" sound out for dad, points to me and says "mom", is trying to spit the "b" sound out for Bei and then points to himself and then we always remind him about Elvis too.   Kai's expressive continues to be difficult.  I am asking his Auditory/Oral school if they will support him in sign language.   It is a stretch to ask them to do it, because it isn't their curriculum.   I want him to remain in the Auditory/Oral school because he is closing the gap on receptive language and they provide him so many incredible services.   Yet, he needs an expressive language also. 

The next venture for him is to start swallowing and feeding therapy.   The therapist at Functional Kids really believe that a lot of his issues stem from his oral delay.   We are going to start hitting that really hard.  I am waiting to hear back if my insurance pays for the CPT4 codes that are billed before we dive in.   I don't want to end up with a big bill in 6 months. 

Kai is making remarkable progress!!  It has been incredibly rewarding to parent him and see his hard work pay off.   He is a blessing and an exceptional child. 


 

First Day of School Pictures

 I've got him mom!

 Uh Oh!  He is getting away!

Defeat! 

 

Most people proudly show off their children's first day of school pictures.  Mine however are always a thud.   We are always racing to get to school on time, even on the first day.   So I am yelling "hurry, run over there, hold Kai and make sure you are smiling.   Good enough!  Let's go!" 

 

 

The pictures below are of Bei that I took of him at his school.   I think there is something sweet and innocent about each picture. 

 

 

 

 



Parenting Partner

The other day an acquaintance told me how she has been encouraging her single 20 year old daughter who is currently going to college that she should have a baby. She went on to tell me how she longed to be a grandmother and she just couldn't wait until her kids started having babies.    Let me just say "Knock Knock Puddin Head!"    Too many people go into parenting without giving it the proper due diligence.   It is not for the faint of heart.   It is rewarding but it is also exhausting, frustrating, painful, anxiety-ridden and just plain hard work.   And I am not talking about my special needs child.

Luckily, I can't imagine parenting these past 5 years without Dan by my side.    Dan is the perfect parenting partner for me.   We have similar values and similar ways in which we parent.    I personally LOVE how he parents our children even though he is not the dad that is home by 5:00 every night.   Dan is a workaholic.   Dan is usually out the door before we get up and he gets home late, usually after 7:00 p.m.   Fortunate for us, both our kids have late start schools so they can have later bed times, so that they get to spend some time at the end of the day with Dan.   What I appreciate is the fact that Dan works really long hours so that I can stay home with the kids, but after working those long hours he comes home and spends quality time with the boys.   He doesn't sit in front of the T.V. instead he reads with them, plays basketball, soccer, Wii and lots more.  Weekends are our time together as a family.   The best thing about Dan is that he meets the boys where they are at developmentally, emotionally and intellectually.   He really knows how to build character and has a natural ability to bring out the best in people.    He is like a coach, motivating, encouraging yet having a strong hand to lead them.   I appreciate and I am so grateful for his parenting style, the way that he loves our children and the fact that he isn't afraid to demonstrate that to them openly.

Our marriage has been strengthened by having the kids in our life.   We work as a team and have this common goal of raising, healthy-minded, independent, God-Centered children.   The depth of our marriage has grown immensely in the past 5 years, for that I am blessed that I am not parenting on my own!