Car Seat Wars

There are many things in life that I, at one point in time, have taken for granted....my house, clean water, food on the table, heat...and the list goes on and on.   Although insignificant compared to the ones mentioned, I would like to someday be able to add another to the list: a child that gets into their carseat without a battle.

I don't know when it started (seems like months ago), but Isabella has been refusing to get into her carseat.  She gets into the car and wants to play with the car seat buckle but when I come around and tell her to get in so I cajjjjn buckle her I hear a loud "NO!" and she moves over as far as she can so I can't get her.  If I do reach her and attempt to put her in, she fights me and I literally have to wrestle her into the seat.  It kind of seems funny picturing this as I am writing, but in the moment it is anything but funny.  I have to plan on leaving the house earlier than normal just so we have time for the car seat battle.  I have tried bribing the girl with her favorite things and she has this stubborn side that continues to say "NO"!  I have tried time outs...nothing has worked (stickers worked once but the next time it failed).

This is stressful and brings up unwanted anger at times, but when my patient husband comes in the house with the kids and he is frustrated that he cannot get our dear child into that car seat.....yes, now we have a problem, because he does not get frustrated easily with these kind of issues.

The next morning as I am sitting at the breakfast table I am praying that God would help us figure out a way for Isabella to get into that seat.  I was thinking all morning of what I could do or bribe her with to make a less stressful exit.  I came up with nothing.

Out to the car...Isaiah buckled in...Isabella in the car but not in her seat.  I decided to just get in my seat and start the car.  "Time to go....Izzy get in your seat so you can buckle your seatbelt."  She climbed in (maybe with a little prodding; can't remember) and I helped her buckle up!  This happened three more times today during our outings!  Well, it may not have been completely perfect but no major tantrums.  I did have to change it up a little: once with food and another time with a crazy accent calling her "Ma Lady" (Isaiah thought that one was funny).

Tomorrow could be a completely different day, because what works one day doesn't always work the next.  But for tonight, I am going to enjoy the victory and some day I will be able to add to my list: a child that gets into their carseat without a battle!

CHOP

CHOP.  Children's Hospital of Philadelphia.  That is where we spent our day on Monday.  CHOP's genetic department sees children with the 22q deletion and duplication (Izzy has the duplication) so we wanted to take Izzy to make sure we were on the right track with her health and therapies, etc.  Many children with the deletion have medical issues and the duplication is more puzzling so they like to rule out any health issues.

The thought of driving to Philadelphia with the rush hour traffic was not giving happy thoughts!  So a friend recommended that we take the train.  Woke up at 5:00am, quick got ready, had 2 wide awake kids before 6 and left to take Isaiah to the babysitter.   After dropping him off headed for the train station.  Now I really did not have anxiety about these appointments at CHOP, but I did have some anxiety about the possibilities of my child's behavior on the train and throughout the day.  (We are having some behavioral problems and tantruming with screaming and kicking).   Thankfully, we made it through the train ride with no major meltdowns (Izzy was pretty much the only child on the train and everyone else was either sleeping, working on the computer or on their phones, etc....so you can imagine how quiet it was!).  

Arrived in Philly and then started our 15-20 minute walk to CHOP.  Everything going smoothly until meltdown #1 started.  Our dearest did not want to be in the stroller (or something like that..can't quite remember) and so she started arching her back and crying to get out.  Can't remember if we took her out right away or not but this lead to an all out tantrum and so there in front of the CHOP building on the ledge we set up a "timeout seat".  Now my husband is such a blessing because he has incredible patience with her and once the tantrum was over we continued on our way. 

Our first appointment was with the genetics department at 9:30 am.  (I may be giving too much detail for you to read, but this is also for me so that I can remember what happened, etc.).  Many people were coming in and out talking with us including a genetics fellow doctor,  a doctor in charge of the 22q program and the genetic doctor that is in charge of the genetics department at CHOP.  They asked us many questions about her developmental history, my labor/delivery, and both of our families history.   They took some measurements of the distance between her eyes and looked at her fingers, feet and ears because sometimes they can give a clue about some genetic conditions.  There were no major issues with that.  They told us that she looks "normal" and there is nothing about her physical appearance that would say she has any abnormalities.  At some point in time, Izzy decided she wanted out....and I couldn't blame her...being trapped in that room without any time to run was not fun.  So a wonderful student that was there took her into a nearby room to color with her and play...now we could talk without interruption.

I cannot say we really learned anything new after talking with them.  We had done our research about 22q after her diagnosis in April and unfortunately there really is not much known about it because it has only come about in the last 10 years (not that it wasn't there before).   To put it into perspective,  CHOP has seen over 500 children with the deletion and only about 50 with the duplication.

Izzy saw a developmental pediatrician at CHOP when she was 2 and the doctors only had that to go by until they met her.  They seemed pleased by the progress she has made but they said there is no way to know her maximum potential because the duplication is so variable.  Variable, meaning, some people who have the duplication have no learning disabilities and appear to be completely typical developing.  That being said, there is a chance that Isabella's duplication may having nothing to do with her delays and there is something else causing it.  Despite this, they did not feel any further genetic testing was necessary and they felt we could assume her delays are from the duplication.  Make sense?  Genetics is so complicated but also fascinating at the same time.  

We left that appointment with them wanting us to have her seen by a cardiologist and kidney doc just to check off that she doesn't have any health issues (they like to run the kids with the duplication through the same testing as the deletion since they don't know as much about the dup).   They also wanted us to follow up again with the developmental pediatrician so they can keep tabs on her progress and assist with recommendations about schooling, etc when the time comes.  On to the next appointment.....the pediatrician.  We were 40 minutes early and meltdown #2 occurred!  There is no ability to reason with her at this stage and so it is difficult controlling a child that is making herself as stiff as a board and screaming (yes, picture this in a waiting room)!   They were o.k. with us going down to get lunch first before the appointment so that's what we did.  Ced put her on his shoulders and we walked to the cafeteria.  

Had a decent lunch and back up to the pediatrician.  All of the children with the 22q dup see the pediatrician at CHOP to look for heart murmurs, immune problems or any other medical issues that may arise.  She got an A on that...very healthy!  If I remember correctly he said that if she doesn't have any of these health problems found now then they won't arise when she is older (from the duplication that is).  Had 30 minutes until our next appointment with speech and I have always been concerned that Izzy may be borderline anemic so the pediatrician said they could check her for it and in that 30 minutes she had blood drawn.  Poor girl cried as any child would but once she could pick out a sticker the tears lessened!    

Now we headed to the speech therapy department (phew....last appointment of the day).  Started with her at 1:30pm and she completed a standardized test to evaluate Izzy's level of comprehension and expressive language.  Izzy tested at 2 year, 1 month old for both receptive and expressive language.  I have to admit I was disappointed.  She had been evaluated in April or May and the same test had been done.  Since I saw her performance in both tests I was excited because I could tell she was doing better this time around however she tested at a very similar age both times.  Despite my disappointment, it was fun to watch my husband's expression during the test.  He got so excited whenever she got an answer right and it almost seemed he was holding his breath waiting for her response.  Whenever she got one right he would smile and look at me.....he was a proud dad.  I was proud of her as well!

The day was over and we started our walk back to the train station.  Got some dinner for the way home and boarded the train.  The first part of the train ride went smooth and Izzy was watching some videos on the IPAD that we had downloaded.  Something happened....her video stopped and not sure if that is what caused meltdown #3 or not but we had meltdown #3 on the train.  Thankfully we were in the first seats up front and so there were no seats on front of us.  I had her for awhile and after a time Ced took over and tried to get her to calm down.  He set her on the floor up front and held her there and she had another "timeout".  At home when she goes into timeouts she seems to do better after she gets out of them so hence that is why all the timeouts on the trip.  At some point (it seemed like an eternity) she calmed down and our stop came up so fast that we almost missed getting off.  

Well, that was the day.  It seems that we will be making some more treks to CHOP in the future. 

    

Kid Corner 2

From time to time I like to write about my kids new developments because as time goes on it's easy to forget the specifics about that age.  It's amazing how I live in the moment and have trouble remembering back to when Isabella was a newborn or one year old or when Isaiah was just starting to walk...maybe some people have better memories than me but I tend to forget until I see a picture and can't believe they were that little.

Isabella: 

I cannot say that there has been significant improvements in her cognition and language abilities since the last time I wrote, but there has been some new words and I think her ability to recognize objects, etc has improved even if she can't always say the name or communicate it for us to understand.  

Izzy words (that I have heard her say spontaneously without my prompting her...could be more but this is all that I wrote down so far...this is more for my record than anything):

*Banana                  *Izzy               *Monkey               *Wash

*Drink                     *Isaiah             *Bird                     *Jump

*Eat                         *Mommy         *Duck                   *Sit

*Time to eat             *Daddy           *Horse                   *Deep and wide 

*Juice                       *Nani              *Donkey                *In

*Cheese                    *Poppop         *Hands                   *Put in

*Pizza                       *Grandpa        *Toes                     *Out

*Water                      *Outside          *Nose                    *Open

*Ice cream                *Water table     *Ear                       *Up

*Pretzel                     *Puppy            *Teeth                    *Hold me

*Soda                        *Pig                 *Hair                      *Help me

*Chip                        *Cow               *Toothbrush           *Down 

*Applesauce              *Sheep            *Barrette                 *Cry

*Apple                       *Fish               *Necklace               *Wet

*All done                   *Shoe              *Sock                      *Pants

*Shirt                         *Baby              *Keys                      *IPAD

*Seatbelt                    *Book              *Boat                       *Mitten

*Paper towel              *Net                 *Marker

Her writing ability is still at the scribbling point and she has not chosen a dominant hand yet....I would say 75% of the time she uses her right hand but the other times it is her left.  I do think she has more of an interest in using markers and crayons than she used to so that is good to see. 

After her 3rd concussion with another trip to the ER I said enough is enough!  There has to be a way to strengthen her muscles and her awareness of her surroundings to keep her from falling and hitting her head (of course I know I cannot prevent this 100% of the time, but she cannot afford more trips to the ER like this).  We increased her PT to once a week instead of every other and the PT is focusing a good bit on getting Isabella to be aware of her environment since may times she doesn't pay attention to where she is going and that is why she trips.   Since that last trip to the ER, I have seen improvement....YEAH!!!!!  The parks and playgrounds have been our friend and we having been going there too many times to count over the summer.  There is one playground at a school down the street from us that is for 5-12 year olds (according to the sign) and my kids love it!  There are some tall things to climb and I can't tell you how good this is for Isabella...sometimes I have to hold my breath for fear of her falling (I am there with her) but it forces her to look down at where her next step is.  Going up the climbs is easier than coming down but I do believe that there will be a time where she will be able to climb down these things without my guidance.  Last summer she would not have be able to navigate this type of playground without falling and me being the terrified mother.  I am proud of her!
**I am finishing this post at a later time and just tonight at this playground she was able to hang for a few seconds from a bar....I never used to be able to get her to even grip the bar with me holding her!)

She still has difficulty socializing appropriately with other kids but of course that has to do with her communication and understanding abilities.   I am thankful for the children in her life at church, cousins, etc who accept her, love her and help her.  

Her meltdowns seem to have slowed down and she does listen to simple directions with repetition of the direction at times.   

Isaiah:

It is amazing how different children in the same family can be!  Isaiah is abounding in speech.  He is talking in 5-6 word sentences and I am amazed at what comes out of his mouth.  I cannot believe an almost 2 year old understands what he understands and some of the things that he remembers.  I always thought I should keep a journal of the things children say because it is so cute and innocent and you forget 10 years down the road.   Some of his sayings:

**Mom, where dad go?  Mom, where Uncle Mo go?

**Ma, Maaaa,  MAAAAAAAA!" (when he is trying to get my attention and I am not answering right away

**Frog jump in the water. (from an amusement park show we went to)

**I don't like that 

**I want to get in shower (the kid loves showers)

**I want my blue shirt on!

**I want my socks on

**I want my crocs on

**I want to play IPAD

**I want you hold you (meaning hold me, but he says "you" instead):)

This child is very particular and I am not sure if this is a phase or if this will transform into part of his personality.   He is very particular about what he wants to wear and he is very into wearing socks and what kind of shoes he wants to put on.  If you say no or get the "wrong" one this throws him into a crying fit!  He is constantly talking and always wanting something whether it be a drink or a snack or to go outside, etc.  This is the exhausting part but it is a part of his age!

One particular day, I saw him get his play net (like for catching fish) and he placed a small beach ball in it with help from me.  He then proceeds to raise the net high up in the air and slam it down on the ground to try and get the ball out.  He repeats the process until the ball comes out and then does it all over again.  You can probably imagine that this didn't last too many days because a few days ago I saw the ball all crumpled with a hole in it!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I enjoy watching my kids interact....they don't play house together or kitchen or trucks with each other (maybe every so often) but they do like to chase each other.  Now my husband wrestles with them so I was not surprised when one day I see both of them wrestling each other.  Isabella was on top of Isaiah with his struggling to get up.  Once she let go it was a race with Izzy chasing Isaiah (he loves to be chased) and once he slowed down they are both bear hugging each other with one trying to pull the other down.  We are really not a violent family and it was humorous to watch.  I was the referee because I didn't want any injuries, but I did manage to get some of it on video.   

Meltdowns....and many more!

Every child has meltdowns.  At least that is what I call them...the crying, the not listening, the tantrums  and on and on.  Isabella seems to be having more of them (or maybe that is just my perception).  Sometimes I know what precipitates them and other times I do not.  She may start crying; she may go limp and refuse to move so that you are picking her up by her arm and feeling like you are going to pull her arm out; or she may starting running around with no purpose and is hard to control; holding her is not always an option as she wriggles out of your arms.    

When Isaiah (almost 2) has a meltdown, it is not easy but I know that one day he will understand and learn to control his feelings better.  When Isabella has a meltdown something happens inside of me....my body becomes tense, I feel anger sometimes and I feel sadness that my daughter has to act like this because she cannot explain to me her feelings.  Sometimes I want to scream or just sit down and cry.  I am just being honest.   My hope is that she will grow out of this to a degree....but what if she doesn't?  She has such difficulty understanding danger and safety and listening because she doesn't understand what those terms mean and what consequences can happen because of her actions.   As soon as she comes out of her meltdown, my body relaxes and I feel like I can have a somewhat normal life again.  

I think this is my post of honesty today....

Recently I have been feeling distant from the Lord and I know it has to do with my struggles with Isabella.  We are told in Scripture that we will have trials, right?  Wouldn't it be great if we could pick and choose our trials so we could prepare ourselves a little better?  Of course, life doesn't work that way.  My child has difficulty with understanding and communicating in a typical way....but, what about those parents that have to endure losing a child; raising a child who may never walk; having a child with health issues and being in and out of the hospital (the list goes on and on)?  There are people that have to endure so much more than me and yet I pity myself at times....yes, that is wrong, but again this is my honesty post!

In church today there was talk of humans wanting to be in control and not submitting to God (that is in my own words) and the trials and testing of faith that Shadrach, Meshach and Abednego had to endure with the fiery furnace.    Here are my 2 thoughts:  
1. Daniel 3: 17-18: "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king.  But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up."  

I believe without a doubt that God can heal Isabella even with a permanent genetic condition.  But, even if he does not (and this is very hard for me to accept...that even if He does not)....I must continue to serve my God and praise His name because He is the one in control.

2. Isaiah 29:16:  "You turn things upside down, as if the potter were thought to be like the clay!  Shall what is formed say to him who formed it, "He did not make me"?  Can the pot say of the potter, "He knows nothing"?

I am the clay and the Lord has formed me and created me.  God is in control....and I pray that He continues to remind me of that.


 

Birthday Fun

We had a birthday party for Izzy Saturday.  Can't believe she is almost 4!  She got to wear her pretty birthday outfit sent from her aunt "Mo Mo"!

This year we actually had a theme....Mickey Mouse!  It is difficult to know what kinds of thing Izzy likes because she can't communicate it to me.  However, she knows who Mickey Mouse is and every time we are in a store she points out the "Mickeys" to me, so Mickey Mouse theme it is!

 After some prompting, we got her to try blowing out the candles.

22q

Have you ever heard of it?  Me neither.....until Isabella was diagnosed with it.  On April 16th we had had an appointment with Isabella's doctor and he wanted us to come in (rather than talk over the phone) to talk about her genetic test results because they were complicated.  That is not what I wanted to hear.   We were told that Isabella was found to have a chromosome 22q11.2 microduplication (meaning a part of one of her 22nd chromosomes was duplicated).  We were given 2 research papers on this topic by her doctor who unfortunately didn't seem to know much about the duplication because they specialize in other areas of genetics.  They told us that the complicated part was the size of her duplication was smaller than the other participants of the studies in the papers.  Because of this, they could not be 100% sure that this is the cause of her developmental delays.  (Now since over a month has passed and I have researched this more, I have read that others have smaller duplications as well).  What we do know is that this happened completely spontaneously because my husband and I were tested and we do not have the duplication (from what I read 70% of the people with the dup have it passed down from a parent and with 30% it happens spontaneously).

Unfortunately, after the time spent researching this I still don't really have a grasp on how she will progress.  This syndrome (not sure what else to call it) is so variable that some people have it and have no symptoms, others have mild symptoms and on down to severe.  Some children have medical issues and others do not.

I have had some time to process all of this and I am relieved that we now have a reason for these global delays.  One day we have no idea what 22q stands for and the next day it is a part of our life.  Knowing this has opened up a whole world of support and connecting with other families with children of the same.  I have found a facebook group designated for families with members with 22q duplication (there are also 22q deletions as well).  Through a website we found out that a few years ago someone started a 22q at the zoo awareness day where people around the world spend a day at a participating zoo and connect with other families in similar situations.  May 19th was the 22q awareness and so we spent the day at the Phillly zoo.  I was able to talk with another mom who has a 6 year old son with 22q dup and also talked briefly with 2 of the coordinators at CHOP where there is a genetic center called "22q and you" that is for children with the deletion or duplication.

I am currently in the process of getting an appointment for Isabella at CHOP.  I am hoping we can get some more questions answered from the experts who are currently researching this.  I don't know that much will change in the course of what we are doing now for her as far as therapies go, however they will be able to direct us from a medical standpoint as to what we should be testing her for.  Apparently she needs her heart, spine and kidneys tested to make sure there are no underlying health concerns.  After talking with the coordinator it sounds like she may be fine with those things because she has had no heart concerns, etc at this point, but I guess we still need to get her tested.

Wanted to share some pictures from our fun day at the zoo!

Izzy holding daddy's hand!
They were giving away toy zebras and Isaiah had to have one in each hand all day!

None Other Than Mother's Day

If I am going to blog today, it seems fitting to write about my Mother's Day...  

We have a skylight above our bed and so in the spring when early mornings are light that means I am awake. At 6:30 am I knew I wasn't getting back to sleep and of course my moving in bed woke up the hubby.  We decided to get up and enjoy our coffee as we did not hear any little sounds coming from the other room (usually it is drink your coffee in 5 minutes because we have to walk out the door or get the kids ready).  Ahhhh...I usually do not get up quite this early if I don't have to. But, I have to admit it is my favorite time of day because it is not just our house that is quiet but the world around me is mostly silent except for the birds singing outside and a few cars going by. 

We enjoyed coffee and breakfast outside on our patio furniture and talked about our landscape and what we liked and what we want to improve on (yes, some people may think we are a little nerdy, but we love to landscape with perennials, etc and I love that my husband enjoys this too).  

If one is looking at the camera, the other one is not.
If one is smiling, the other one is not.

Quietness and calm are all over!  Kids are up (oh, but I love them)!  Amazingly when you get up early we leave for church thinking we are late, only to realize we have a few minutes to spare!   At church, all the young kids give their moms a carnation so I felt special to receive one from Izzy.

After church, Ced and another friend decide to take us out for lunch...very nice to not have to cook!  Lunch was delicious...kids were NOT on their best behavior and I unwantingly met the kitchen staff as Izzy ran through the open kitchen door with me chasing behind in high heels! 

Now all is quiet and Isaiah is excited to see Grandma and Grandpa tonight.  Of course we all are but when I say Grandma and Grandpa are coming Sunday, he repeats me and gets an excited look on his face (wish I could permanently capture the look for the future because I don't want to forget those expressions).  

Kid Corner

Maybe on the days that I am frustrated and feel overwhelmed with Izzy's developmental delays, I will be able to look back on these blogs and find joy in the progress that she has made.  These seemingly insignificant progressions are what allows me to well-up inside with genuine pride at her abilities.   I periodically want to blog about my children's accomplishments as a way to remember how far they've come.  

April 2: Every Tuesday at the end of Izzy's preschool morning, all the children sit in their seats and wait for their parents to come in to pick them up.  When it is their turn they go up to the teacher, state the letter that they have learned that day and get the candy, etc that starts with or relates to that letter.  Usually Izzy runs up to her teacher (or right past her if we don't cue her) and it may take a longer time to coax the letter out of her or she may completely ignore the fact that we want her to say the letter.  This day, Izzy runs up to her teacher, teacher asks Izzy what letter they learned, Izzy says "X" (or something that sounded like X) without hesitation, takes her Twix bar and runs to me.  

April 2: On that same day, Izzy's preschool gym teacher came up to me and was beaming because Izzy said "Bye" to her.  This was the first time Izzy had spoken a word to her since the beginning of the school year in September!

April (beginning of month):  This may seem very subtle but I noticed Izzy was able to fill a cup (not quite full because it is too heavy) and then pour it out in a normal fashion.  She has not been able to do this before probably due to hand/forearm weakness, decreased coordination and just plain disinterest!

Holding the cup like normal 

Pouring the water into the sink

I am adding this picture just because I think it is cute.  I caught her this morning sitting on the "potty" with her leg crossed, reading my Mary Kay magazine!

Writing about Isaiah's accomplishments are somewhat different because it is not as specific as Izzy's.  Isaiah's speech is really developing and I am always amazed at what he picks up on.  He puts two words together (sometimes on his own and other times he is mimicking us).  Loves to say "Daddy's truck" (in a manly voice); "awww man" (o.k. that comes from me), "Izzy nooooooo"(that is starting to be a regular!).   He loves his big sister and many times asks for "Izzy" (with a lisp) after he wakes up from his nap.

He is a bit attached to his mamma and daddy and has difficulty going into the nursery at church, but usually stops screaming after 5 or so minutes.  In fact, as soon as he sees the door to the nursery he starts crying!  I am the one that races to pick him up after church just so I can see the huge smile he gives me when I come through the door!

One other thing that both kids looooove to do....they are obsessed (more so Isaiah) with dipping their food into any kind of sauce (ketchup, BBQ, sour cream, etc).  In fact, sometimes I will put a dipping sauce on their plate even if it might be a weird combination so that they will eat their vegetables.  I think they might take after their poppop with liking ketchup on everything!

What a ham!  We'll say he takes after his daddy :)

Preparing for Spring

Spring is here but it sure doesn't feel like it with the weather in the 40's recently.  According to the forecast, warmer weather is coming!  There is always so much clean up and preparations to get the garden and flower beds ready for planting and mulching.


We are trying something new this year....our own mini-greenhouse!

In the past, we have started seeds in the greenhouse where my husband teaches but right now it is easiest to have the seeds at home where we can manage them when it suits us.  I was a little skeptical at first, but I actually am excited now and think it might do it's job!  The past few days it has been in the 40's or low 50's but the greenhouse has kept in moisture and warmth.  Hopefully we will start to see some seedlings sprout in the next few weeks.

Items we planted (on 4/3/13):
*Roma tomatoes
*Peppers
*Cucumbers
*Basil
*Columbine flowers
*Lots of annual flower seeds (not sure what these will do)

The garden has been rototilled and cleaned up and I am hoping to get lettuce and spinach in this week.

A good part of my time is also spent raking the leaves out of the flower beds.  Yes, that sounds like a fall thing but if you know our house, you know all the mature trees we have in our yard and it makes for endless raking in the fall and then more raking in the spring.  I leave some leaves on the flower beds in the fall to help protect the plants through the winter.

Our place is always a work in progress but I guess if we had everything perfectly the way we wanted it we would be looking for a new place to fix up!

My Son

My daughter has been the center of most of my posts so far, but I do not want to forget about my son.   Isaiah means Salvation of the Lord; God's helper.  This little boy is full of spunk and energy.  I am amazed everyday at how fast he picks up on words and he is now at the point of repeating things we are saying (this should be fun) :)   

The other day we were all at a store and my husband had him on his shoulders to keep him entertained.  He is usually non-stop "on the go" and if we put him down on the ground we spend our time chasing him instead of shopping.  My husband wanted to ask a store employee a question and to get her attention he said "ma'am".  Before the employee could turn around and respond, we heard a commanding "MA'AM" from the top of my husband's shoulders.  Everyone who heard got a good laugh!  You don't even realize he is listening.  

Isaiah loves to say hi to everyone in the grocery store, etc.  It must be the age because I hear of other children that do this too.  He gives anyone a big smile and waves his hand and that gets him plenty of attention!

He just looks like trouble!

What a ham!

Isaiah's new thing is to jump.  He LOVES to jump!  Not just on the ground, but now he has discovered he can jump off things. Unfortunately, he has no fear of falling and so that makes mommy a little nervous.  Daddy says he is just being a boy....well I've been to the ER enough with Izzy and I am not ready to start with him.  I think I am more nervous because I always have to keep an eye on Izzy and her balance, but this boy is actually fairly steady.  As soon as it is time to go up the steps, he gets up on the first step, turns around and wants to jump off; if he goes into the bathroom where there is a step stool he wants to jump; the small slide we have is now a playground for jumping because instead of sliding down he gets to the top, turns around and wants to jump off.  At times, he is courteous enough to say "mommy hand" so I can hold his hand, however most of the time he feels it is not necessary to have me present.  

These are the stories I want to remember in 10 years. 


 

The MRI

Today was the day.  About a month ago, Izzy was scheduled for an MRI of her brain but her pediatrician didn't clear her for it because she developed a cold.  We finally rescheduled it for today.  On Wednesday, she went to the pediatrician again and she cleared her, however she then started to develop a runny nose and I was concerned that they were going to cancel it again.  But, the anesthesiologist didn't seem concerned because her lungs sounded clear.  Here is a run down of the day....

**5:50 am:  Izzy woke up bright and early...thank you darling for that!  She must have known something was going on today.

**5:50 until 9:00 am: Izzy sat in our bed playing IPAD until I rolled out of bed to get myself and other things ready.

**9:00 am: got a call from the hospital saying they were running ahead of schedule (now how often does that happen!) and asked if we could come now.  Sure thing...just had to get shoes and coats on and we were out the door.

**9:45 am: went to admitting office, got our lovely bracelets on with Izzy's name, birthdate, etc and were taken to pre-op area.  Izzy got to wear the too big, too cute hospital pjs and socks.  The pediatric anesthesiologist came in to explain what would happen and to answer any questions.  About 15 minutes before taking her to the MRI area, the nurse had me give her a syringe by mouth with a drug called Versed to calm her as they were going to eventually sedate her.  I asked the nurse how kids usually react to this and she said they either fall asleep, cry or become the "happy drunk".  When we were ready to get transported, I sat in a w/c and held Izzy on my lap.  Isaiah and hubby were walking behind in the stroller but Isaiah just couldn't have it and was crying, so we rearranged some things and I now had both kids on my lap.  Isaiah was content with too fingers in his mouth and Izzy was becoming very relaxed on account of the drug.  (picture below is before we were taken to MRI area)

**About 10:30 am: Got to the area where the MRI would be performed,  Izzy wanted daddy to hold her and she now had become the "happy drunk"(was very smily/happy and relaxed).  I gave her a kiss and told her I loved her and the anesthesiologist carried her into the MRI room.   We were taken up the the waiting area and given a pager so they could find us to tell us when we were allowed to see her.  We were told she would be in MRI for 45 minutes.

**12:00 pm: Still no news (I thought she should be out by now).  I was getting exhausted running after Isaiah.  He was non-stop the entire time, wanting to climb on the waiting room furniture, go up and down the steps and just run around.  His big thing is saying hi to everyone now, so he at least made people smile with his antics.  We also went to visit some of my co-workers to pass the time.   At noon, I asked the woman at the front desk if she could call and see what was going on and she called and told me that Izzy was in the recovery room (she told the person on the other line that they should have called to let us know that she was out of the procedure...uh-oh...didn't want to get anyone in trouble).

**Sometime later our pager went off and they told us that we could go see Izzy in recovery but Isaiah couldn't go in.  I just went.  She was all snug with blankets and was in a crib.  She looked somewhat dazed but was awake.  She had a few nurses giving her lots of attention and one of them was even singing to her they said.  Izzy then got wheeled to another room for a short time to make sure she was coming out of the anesthesia o.k.  I held her and the nurse said she would probably be somewhat floppy so I should support her head.  She hadn't eaten anything since last night or drank anything since this morning so she got apple juice, jello and crackers and she tolerated that well.   Within minutes, daddy and Isaiah came to visit.  We were continually feeding Isaiah snacks to keep him happy so it was no surprise that he had an oreo in hand and a chocolate covered mouth.  Now this sparked Izzy's attention when she saw the cookie and now she wanted to jump up and go to daddy.   She did pretty well walking but we had to steady her because they said she may be uncoordinated for up to 24 hours after the anesthesia.

**Around 1:00 pm:  nurse said Izzy was doing well and that if we wanted to be discharged we could go.  She explained the discharge papers and we were off to the car....Izzy and mommy being pushed in a w/c (this did not make Isaiah happy).

**Soon after we left in the car, Isaiah was out cold (I called that as he was non-stop on the go in the waiting area).  Izzy fell asleep later in the afternoon and now I am sitting down to write.

**Did call her doctor's office to see when we would know the results and they said probably by Monday.

The Little Things That Make Us Smile

Someone once told me that at some point you need to just find the humor in some of your child's behavior and not let all the frustrations get in the way (this person has a son who is on the autism spectrum).  

For a very long time now, we have been trying to teach our daughter how to get dressed/undressed.  Sometimes she fights us on even trying and other times she starts but has difficulty completing the task and needs hand over hand guidance to finish.  Needless to say, our morning and evening routine of getting dressing and putting pajamas on can take a very long time and it is frustrating but we continue to keep at it.

My daughter and son share a room and the other night they took quite awhile to settle down and finally when all was quiet I went up to check on them.  I walked over to check on my daughter and I couldn't help but smile and start laughing to myself because this is what I saw....

I  felt like she needed a little mermaid fin!  Many times when she tries to put pants on she puts both her legs into the same pant leg.  She must have taken her pants off and tried to put them back on and then obviously fell asleep.  That's my girl!  (Please disregard the mismatch of pajamas she is wearing!....we also fixed her pants so she did not sleep like that the entire night).

Waiting

    Three weeks ago my husband and I, along with our daughter, sat in the waiting room at a clinic for special children.  This visit was occurring because her neurologist was questioning if she  may have a genetic disease called Rett syndrome (a regressive disease) and was recommending genetic testing as a source to possibly determine the cause of her developmental delays.  This was a situation I never imagined I would be in.  

   This clinic is a unique place in that they specialize in genetic diseases that occur in persons with Amish and Mennonite background (which my husband and I both have).  Her doctor seemed very knowledgeable and got right down to business.   He wanted to know last names/maiden names of our families to determine if there may be a genetic disease that run in those family names.  It was actually interesting listening to all of this, however reality set in and I remembered this was to determine if my daughter may have one of these diseases.  At the end of the hour and a half they took blood from her, my husband and myself with the plan to do three different genetic tests.  If those came back negative, then they could run a much bigger test looking at myself and my husband's blood work as well.  

    It was somewhat sobering on the ride home as I was scared and nervous but also relieved that we may find out some answers.  After the initial thoughts of this set in, the days that came were fairly normal as we waited.  I don't know if it was the next day or a few days later, but one day I realized that I was completely calm about this.  My husband can attest to the fact that I am a worrier and I surprised myself of this inner peace.  I can only explain it as the Lord granting me peace and patience in the waiting.  I decided that if we were going to get bad news then I was going to be thankful of this time of "not knowing".  Of course there have been times of weakness where I completely talked myself into "knowing" that she has Rett syndrome or another disease but thankfully those moments have lasted briefly and then the peace returned.  

    One week went by and we got a letter in the mail from the clinic.....my husband and I were both standing in the kitchen and we just looked at each other.  We opened it and had relief when the first test for HERC2 was negative!   About two weeks went by with no other responses.  At the three week mark from our visit (which is today) I needed to know what was taking so long.  I called the clinic after saying a short prayer and was told that the third test usually takes awhile and we would know by the end of the week.  I then asked about the test for Rett.  They had done the test and the result brought tears to my eyes: negative!  Just to confirm, I asked the secretary one more time and she said, yes, the test was negative.  Thank you God!

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   As a final note, I will say that I have appreciated the support, encouragement and prayers of our families.

THE UNEXPECTED

   I am the kind of person that usually has most of my day planned out because I like to be productive. I know I am not the only person out there that does this!!!  So, when something unexpected happens, it really throws me for a loop....
   On Monday I did the usual get up, drop my daughter off at preschool, run errands, pick her up from preschool, come home get the kids lunch, play a little, then off the kids go to nap.....then it's my turn to get my projects done or relax (o.k. so the relaxing piece doesn't seem to happen that often!).   I had just put my son down for a nap and was starting to walk into my daughter's room when out of the corner of my eye I saw her run to her bed and trip over something hitting her head on the wooden base of the bed.  The crying immediately followed.  Now my daughter is somewhat clumsy and tripping and falling is not out of the ordinary for her.  Usually I pick her up quickly, look her over to make sure there is no blood, etc. and then we cuddle until she calms down.  This time when I picked her up and looked at her I saw this...

   So....I freaked out for a bit!  Yes, I am in the medical profession, but when you see a gaping wound on your daughter's forehead, all logical thoughts seem to go out the window.  I did have enough sense to put pressure on it, but now what?  How do I get her and my sleeping son in the car and drive to the ER?  I frantically called my neighbor to see if she could watch my son, but she was not available.   Then I remembered that my husband had a half day at school (Thank you Jesus!).  I called him and he came home immediately.  While waiting for him, my daughter and I both calmed down and once he was home, I took her to get stitches.  Took two of us to hold her down and I have to say this little girl is stronger than I thought she was!  She was back to her normal self on the way home and at 4:30pm she finally got her much needed nap!

Time is of the Essence

    Do you ever think about what you did with your time before kids? I mean think about it...There were no mouths to feed (but mine and my husband's), no toys to clean up, no diapers to change, no one but myself to get ready in the morning...and the list goes on and on.  Now I love my kids dearly and would not change a thing, but I had to think about this. Even with all the “extra” time I think I had, did I use my time wisely? I now sit on this Sunday afternoon thinking, “both kids are napping, I've taken our dog for a walk.....now what do I do?” I stop myself and decide I need to soak in the quietness of the afternoon and enjoy the beautiful, 60 degree weather God has given us on this November day.

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    I have been reading the book One Thousand Gifts by Ann Voskamp and have been challenged to think about my view on time. Did you ever think that there was never enough time in the day to get things done? Try to rush, rush, rush through one thing so you can get to the next? Unfortunately, I am guilty of this. There are a few quotes from One Thousand Gifts that I would like to share:

“I don't really want more time; I just want enough time.” (pg. 67)

“Time is life. And if I want the fullest life, I need to find the fullest time.” (pg. 64)

This is a thought from a pastor that is quote in the book:

“Being in a hurry. Getting to the next thing without fully entering the thing in front of me. I cannot think of a single advantage I've ever gained from being in a hurry. But a thousand broken and missed things, tens of thousands, lie in the wake of all the rushing....Through all that haste I thought I was making up time. It turns out I was throwing it away."
 (pg. 65-66)

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I am encouraged and challenged to just sit and be thankful for the Lord's provision and grace despite living in a place that does not sit still and is in a race to get “things” done.

Lean not on your own understanding

I wrote this post on 11/11/2012 but never published it until now.

"Lean not on your own understanding" comes from Proverbs 3:5.  This was my encouragement today.  I don't quite know how to start a blog.  Where do I begin? 

   I guess I will start with my daughter... 

  

  "Devoted to God". This is one of the meanings of my daughter's name and the reason we chose her name. There is something about having your first child--the excitement, the unknown, the expectations! Yes, the expectations! A list in my mind of what my child will be like and what she will do..."my plans".

  So what happens when reality was the complete opposite of "my plans"?  That is what happened to me.   

  I had a normal pregnancy and delivery and was brought to tears when my daughter was born.  Everything appeared normal, however looking back I would say that her lower muscle tone was the only thing I noticed that seemed out of the ordinary.  At 5 months old, we rushed my daughter to the hospital because she had a febrile seizure (we didn't know it was that at the time). That occurred in the morning....at around midnight we rushed her to the hospital again because of another febrile seizure. Probably one of the scariest times of our lives.  After seeing the pediatric neurologist in the hospital I was somewhat calmed to know that this can be common in children under 5.   As of this date, she has not had another seizure (thank you God)!  

  As my daughter continued to grow she always seemed just a step behind the other kids her age.  She achieved her milestones on the later end of normal, however when it came to language and cognition she was far behind.  Early intervention started at 18 months and although progress was extremely slow, she was showing some improvement.   My daughter is now 3 years and 4 months and improvement continues to be slow.  There is no official diagnosis at this point in time.  If I had to give one it would be Global Developmental Delay (she is delayed in all areas of development).   (As a side note, her pediatric neurologist does not think her delays are caused by the seizures).  

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  I thought I was a patient person...but I found out I have room for improvement!  When raising a child with developmental delays, patience is a must...and when you think you just might have enough....you need to ask God to give you more!  It has been a struggle to accept that your child may never act or behave like a child their own age, but I am slowly learning that it is the trials and struggles in life that give way to complete trust in God.  MY plans did not prevail...but HIS plan will. 

  I love my daughter with all my heart, and always will, no matter what she becomes or how she progresses.  God is in control.  "Lean not on your own understanding".  This was my encouragement today.