Ambulance Ride, Fever, Pink Eye, Rash and Lack of Sleep Oh My!

It’s been a while since I’ve posted on the blog so thought I better catch everyone up on why.  Jackson’s constipation problems seem like nothing compared to what we have been through this month. 

The first week of December we headed to Seattle Children’s Hospital.  Jackson had an appointment to see an eye doctor and to have an ERG (electroretinography – a test used to detect retina damage).  These tests are required by the manufacturer of his seizure medication since the medicine can cause permanent peripheral vision loss.  The morning of his appointment with the eye doctor, he woke up with pink eye.  He’s never had any problems with his eyes so it was kind of surprising, but good timing.  The eye doctor prescribed the antibiotic right away and within a few hours of waking up with the pink eye we were treating it.  Luckily the pink eye did not interfere with the ERG.  The next day we were back at Seattle Children’s for a 7:30 a.m. anesthesia appointment.  Jackson had to be put under for the ERG.  The procedure was fast and for the first time Jackson woke up quickly from the anesthesia.  We were on the highway headed back home to Spokane by 10:30 a.m.  We were pretty happy about getting home so early and having a little time to unpack and get ready for work and school the next day.  But Jackson’s body had other plans for us.

We were about 30 miles outside of Spokane on Interstate 90 when Jackson made a weird sound.  Kevin and I turned back to look at him in his car seat.  I don’t really know how to explain what Jackson was doing.  It was just weird.  He looked weird, he sounded weird, and it was apparent something was very wrong.  We soon realized Jackson was having a seizure, but it was unlike any seizure he has ever had.  By the time we pulled over and got him out of his carseat, Jackson was in pretty bad shape.  He had lost consciousness and he was blue.  I called 911 while Kevin held him in the backseat.  Those few minutes I was on the phone felt like forever.  I thought Jackson was dead.  When the 911 operator asked me if he was breathing, I didn’t know.  I didn’t want to ask Kevin because I was afraid he would say no.  Thinking Jackson was gone was the worst moments of my life.  I thought of throwing myself in front of one of the semi’s screaming by on the freeway.  I can’t imagine not having my Jackson in this world.  It’s too much to bear.  When I did finally ask Kevin and he said he was breathing, I don’t think I have ever felt such relief.  By that point I was desperate to see the ambulance come.  A State Trooper had arrived but I just wanted to get Jackson in the ambulance and get to Sacred Heart in Spokane.  Considering we were out in the middle of nowhere the ambulance arrival after 10 minutes was awesome.  Before I knew it we were in the ER in Spokane.  Jackson had a 102 degree fever by that point, was extremely aggravated and screaming.  After a ridiculous 7 attempts to get an IV line on Jackson (I was seriously about to punch a nurse) they finally got Jackson on some much needed fluids and some pain relief.  Jackson was out like a light shortly after that and we were admitted to the hospital.  A blood sample showed that he had a viral infection.  The neurologist felt that the seizure was a febrile (fever) seizure and that his seizures weren’t coming back.  (He hasn’t had a seizure since.)  Jackson’s fever broke that night about 2 a.m., followed by a short period of throwing up, and a wide awake Jackson throughout the night.  They took a urine and nose swab sample to determine what kind of virus he had.  The next day we were able to go home about noon.  By 3 p.m. we were at the pediatrician’s office because the fever came back.  The nurse prescribed some antibiotics for an ear infection he had (his first one) and suggested we do the Tylenol/Ibuprofen every 3 hours for a couple of days routine to control the fever.  We were back on our way home.  He did pretty good over the next 2 days so I slowly stopped the Tylenol/Ibuprofen routine on Sunday.  I thought he was getting better.  But Jackson’s body had more in store for us.

Monday around 5 p.m. he woke up from his nap with a high fever.  The kid was burning up.  I instantly started the Tylenol/Ibuprofen routine again.  This fever was bad.  It didn’t respond to the medicines and my poor baby was shaking with the fever.  All I could do was hold him and try to soothe him.  He was so miserable and he kept looking at me with the saddest eyes.  I hated feeling so helpless.  This was the beginning of 6 days of high, uncontrolled fever.  6 days of being up most of the night holding my little boy in his bed while he shook and fought the fever.  6 days of feeling helpless and worrying so much about my little boy that I felt sick to my stomach all those days.  The only good part was when Jackson would finally fall asleep in my arms and get some relief.  I actually loved holding him in my arms while he slept.  It was so peaceful and I was so thankful to have him in my arms, safe and sound, after that horrible seizure. But it was the most wearing 6 days of my life.  Wednesday I took Jackson to the pediatrician and he was diagnosed with ulcers on his tonsils.  This was more than likely the cause of the uncontrolled fever.  All we could do was wait it out.  The doctor did give us Tylenol with hydrocodone to relieve some of the pain and help him sleep.  Unfortunately for us, hydrocodone seems to have the opposite effect on Jackson, it kept him awake rather than helped him sleep.  The fever broke on Saturday and he seemed to be doing pretty good that day.  The next day he woke up with a horrible rash all over his body.  We headed to the Urgent Care where after waiting almost 3 hours the doctor informed us that the rash was a perfectly normal part of this virus.  Typically the day after the fever breaks the rash arrives for a couple of days.  It lasted about 4 days and slowly disappeared.  Over the next few days Jackson slowly got a little better.  He began sleeping like a bear in hibernation.  15 hours at night, a 4-5 hour nap during the day.  His body was finally getting the rest he needed.  The rash went away and his laughter returned.

In the midst of all of this we were scheduled to leave for our annual Florida Christmas vacation.  Needless to say we rescheduled our plane tickets.  Jackson was in no condition to fly.  We left 4 days later than originally scheduled but we made it to Florida.  It was the right decision to make as Jackson needed those extra days to get better.  Of course as we were stuck in the Denver airport on a layover to Florida we noticed the pink eye returned, this time in both eyes.  Thankfully I had packed the antibiotic eye drops so we were on it quick!  We are in Florida now and I am happy to say that Jackson is returning to normal.  His sleep pattern was off the first 3 nights we were here.  He was up till 3 a.m. each night, happy and as playful as can be.  But his pink eyes are better, there hasn’t been a fever, and he doesn’t seem as congested as he has been.  Maybe the Florida sunshine really is magic!  All I know is that we are very lucky that Jackson is typically a very healthy little boy.  I know some of the children that share his brain malformation have a great deal of medical issues and are sick frequently.  Those parents are truly amazing.  My little boy was sick for a couple of weeks and I nearly had a breakdown (well I did have one, a mini one).  I hope we are on our way to healthier days and happy laughter from Jackson. 

Through all of this Jackson gave me a couple of gifts.  The kind of gifts little boys give their Mama’s who secretly wish they hadn’t got them.  Pink eye and ulcers on my tonsils.  Thank you Jackson.  Mama loves YOU so much.  But your gifts, not so much!

23 Days!

I can't believe it has been 23 days since my last post.  Where did the days go?  Well, I know where they went.  There will be a post about those 23 days coming soon.  But in the meantime, I came across a website that I wanted to share will all my fellow special needs parents.  Courtesy of flappiness.com, here are 11 Things I've Learned Since Becoming a Special Needs Parent.  (Although, I do have to say, I think some of these apply to ALL parents!)

1.  Not knowing is a lot harder than knowing.   Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc.  But the hardest thing to admit is that most of it is simply up to their brain and its wiring.  There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient .  Good signs, yes.  But nothing is certain.  The not knowing can drive you crazy if you let it.

2.  The internet is a blessing and a curse.  On one hand, there is valuable information out there.  Yet, information overload can get you stuck.  You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3.  Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer.  It is vital to find people who know what you are going through.  Yet, sometimes it can produce even more negative feelings.  Since there is always someone who has it worse than you, it can make you feel guilty for complaining.  And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative.  Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse.  It can always be worse.

4.  Holidays  and special events magnify the situation.  Birthday parties are no longer joyful events.  Your special needs child is in an unfamiliar setting, one with all kinds of new dangers.  You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious.  People naturally want to know what to buy your child.  And you might not know.  He might not play with toys.  And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present.  No matter what is said and done, there is an air of sadness.  Ditto for Christmas.

5.  Well-intentioned people will silence you and add to your frustration.  They don’t mean to, but it is human nature to comfort and soothe.  Invariably, they will attempt to do so in awful ways.  Some will deny there is a problem and say that everything will be just fine.  By denying there is even a problem, they effectively silence you and leave you isolated in your own mind.  Some will try to remind you how grateful you should feel.  And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6.  Picking your battles will take on a whole new meaning.  A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers.  Even more will judge you for “giving in” to what they view as tantrums and being spoiled.  You, however, know that therapy, joint attention activities, and getting to school are the real non-negotiables.

7.  People will surprise you.  Casual acquaintances will step up to be better friends than the friends you most believed you could count on.  There is nothing like becoming a special needs parent to give one clarity.

8.  Doctors and other experts really don’t know everything.  Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong.  They may encourage you to wait and see.  You will want to believe them and may forget that childhood development really isn’t their specialty.

9.  If you aren’t a naturally assertive person, you will have to become one.   People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs.  Even if it goes against your nature, you will have to fight for him.  You will have to insist — which is both harder and easier than you might expect.

10.  It’s easy to neglect others when you are caught up with the needs of one child.  You can forget the importance of date night with your spouse.  You might forget a friend or loved one’s birthday.  You might realize that your typically developing children aren’t getting enough attention from you.  And you might realize you are not taking care of yourself and are about to fall apart.  You will have to figure out a way to stay both connected and together.  This is hardest thing to learn and do of all.

11.  You will develop an appreciation for the little things.  There are moments of interaction and progress that will steal your breath.  Hugs and kisses are unbelievably precious.  And you will understand why this little soul was given to you. It’s because you are a perfect match for one another.  And that is what sustains you through everything else.

Back to the ER

For those of you reading my blog you know that Jackson has had some constipation issues which has led to two ER visits.  Well the third time is a charm!  We went back to the ER last week when Jackson was again screaming in pain.  I had stopped giving him the laxative, per doctor’s orders, and the second day of no laxative he began screaming again.  Jackson had also had a low grade fever for about 4 days accompanied by a runny, green discharge nose.  What I thought would be a quick in and out at the ER turned into a hospital stay.  The doctor from our second visit was working and since she had seen him before she wanted to be thorough this time.  Another x-ray of his belly showed us that he was still full of poop, although not as bad as before.  After listening to his chest they then did a chest x-ray to see if he had pneumonia.  Luckily that came back negative.  Then came a urine sample with a catheter (it made me cry imagining how much that hurt my baby, especially after the nurse said it make grown men cry).  Next up was another enema.  They did this one a little different and it didn’t turn into a funniest home video.  I was happy about that for Jackson’s sake, but since my husband was there this time I was kind of hoping to watch him deal with the exploding poop fest.  No such luck, dangit.  After all that, the doctor decided to do a CT scan of his abdomen.  By this point it was about 11 p.m. and we are in the ER with two toddlers.  We decided it was time to take Vivionna home to bed which meant only one of us got to stay with Jackson.  Kevin stayed, I went home.  Kevin is good with the medical stuff and since they were going to have to sedate Jackson for the CT scan we decided he would handle it better than I would.  I didn’t like going home.  I went to bed and cried because I wasn’t with my little boy at the hospital.  I didn’t get much sleep that night and when Kevin called at 4 a.m. to say the CT scan was done and they were admitting Jackson to the hospital I couldn’t wait to get back.  Jackson spent the next day in the hospital while they monitored his poops and fever and awaited the test results.  They did find a kidney stone during the CT scan but other than that everything looked fine.  His urine test results didn’t show any infections so that was good too.  His fever persisted for about another day but was then gone, as was the runny nose.  Basically he is still full of poop and will be on the laxative for a while.  The plan is to give him the laxative twice a day until he starts pooping too much.  At which point we stop the laxative for a couple of days until he is regular, then resume the laxative once a day.  He is also on a high fiber diet.  As for the kidney stone we just have to increase his fluids and hope the thing passes relatively painlessly.  It is pretty small but I’m sure it isn’t going to be fun for Jackson.  We have an appointment with an urologist next month to discuss Jackson’s testicles that haven’t dropped, which became another concern to the doctors at the hospital.  All in all Jackson came away pretty unscathed from the hospital visit.  I have to admit it was kind of sweet to spend the day cuddling in bed with my baby and watching cartoons.  We were fortunate enough to find a babysitter for Vivionna so Kevin could come home and sleep too. 

The doctors all agreed that because Jackson isn’t mobile and lies around a lot that that is a strong cause of his digestive issues.  If things don’t change these problems will persist for him.  Kevin and I are now buckling down and making Jackson work more.  We were just used to carrying him around and doing things for him.  No more.  Now whenever we get him out of his highchair or his bed we put his feet on the floor and make him “walk”.  It of course kills my back (the kid is big!), but it is worth it.  Jackson needs to start being upright and moving more if he is going to get better.  We are currently looking at standers for him.  If we can get him putting more pressure on his legs and have him looking at the world upright, hopefully that will motivate him to walk.  He does have a walker that we use a couple of times a day, but we need something more at this point.  We are on a yet another mission for our boy, but as Ghandi once said “What barrier is there that love cannot break?”  And damn I love my kid!

Thanksgiving Thoughts

Thanksgiving is my favorite holiday.  The meaning behind it is what makes it my favorite.  A whole day once a year to reflect and celebrate what we are thankful for is priceless to me.  Here is what I am most thankful for this year:

Friends.  This last year has brought a lot my way.  There have been some pretty high highs and some pretty low lows.  But the resounding factor to those highs and lows has been the friendships that have stayed strong, begun anew, and came out of nowhere.  From our journey to foster parenting, to Jackson’s most recent medical issues, my friends have been there supporting us, giving us their time and energy, and never faltering from our side.  So to all of you, Thank You. 

Helen Keller said “The best and most beautiful things in the world cannot be seen or even touched.  They must be felt with the heart.”  What my friends have given me is felt in my heart every day. 

Happy Thanksgiving everyone!

Down by one

Our family is now down by one.  Last Tuesday was Lillie’s last day with us.  A family member finally stepped up and agreed to take her.  As I packed up her clothes and some toys, I was overwhelmed with guilt and sadness.  I never connected to Lillie and her tantrums and anger were something I didn’t understand.  But I still felt bad that it didn’t work out.  She is a child who needed help getting past the trauma she has been through.  I wanted to be able to help her, I just had no clue how to.  On so many levels I feel like I failed.  I’ll never know if Lillie’s short stay with us helped her any.  I hope it did.  I hope she got to see what a “regular” family looks like and in her future will be able to reflect on that.  I am very happy that Lillie was placed with a family member.  It was the best possible placement for her.  Lillie’s grief was centered around losing her family, I hope that being with a family member will make her feel reconnected and relieve some of that grief for her.  The worst part was that we never got to say goodbye to her.  It was a quick move and when she left that morning for school we didn’t know it was the last time we would see her.  Since we still have her little sister Vivionna, I hope somewhere along the way we will get to see Lillie again. 

Lillie taught me a lot while she was here.  I learned that I do better parenting the younger children.  I learned that our home, no matter how seemingly safe, healthy, loving, and fun it is, may not be a good place for certain children to live.  I learned that my patience level is still very low.  I learned that despite good intentions and desire, you can’t help every child.  I learned that having a home that is relatively happy, peaceful and safe for everyone is the kind of home I need to maintain my sanity.  I learned that parenting the children of others is so much more difficult than I could ever imagine.  I learned that I have limitations and boundaries when it comes to helping children.  That may not sound like a good thing, but as a foster parent I think it is.  Going too far or not far enough to help a child may only hurt them more.   Most of all I learned that I would like to slap the crap out of the parents who have children in foster care.  The pain, disappointment, and fear they have inflicted on their children is beyond unacceptable.  What’s worse is that they are so wrapped up in their issues that they don’t see what they have done, nor do they seem to care.  I just don’t understand it.  Maybe someday I will but for now I am just focusing on how to be a good foster parent (and parent to Jackson) and how to help the children that I can.  Some days that even seems like too big of a job for this Mama. 

Jackson is full of it!

Poop!  That’s what Jackson’s full of.  Literally.  In addition to having to deal with the Lillie drama while Kevin was out of town for a week, I also had to deal with my first emergency room visit with Jackson.  Actually we had two trips to the ER that week.  One was on Wednesday and another on Friday.  I could write a whole blog post about the ER on a Friday night but I’ll skip it this time.  Anyway back to Jackson’s poop filled body.  Tuesday morning Jackson got a flu shot. That night he began screaming in pain.  I finally got him to sleep around 2 a.m.  The next day he woke up in a fairly good mood, had a pretty good day at school, then came home and began screaming.  After about 4 hours I decided I wasn’t going to be able to calm him down and I was starting to freak out.  Even though Jackson can’t talk, he can communicate in his own way.  As his Mom, I’ve learned the meaning of different screams, cries, tantrums, etc.  This screaming was his “I’m in pain” scream.  So off to the ER we went.  Luckily a friend of mine who is a doctor at the hospital met us in the ER which gave me a lot of comfort (Thanks Jaime!).  I’m not good with the medical stuff and since I was all alone it was a little scary for me.  Once they ruled out ear, nose, throat stuff they gave Jackson some pain meds and sent us for an XRay.  As soon as the technician took the picture I heard her say “No wonder this kid is crying in pain”.  My heart instantly stopped.  They showed me the XRay and pointed out a bunch of darkness and told me that it was poop.  As my Dad would have said “The kid is full of shit.”  The doctor said that sometimes a flu shot can create a concrete dam that backs up the poop.  Good to know.  At least I knew I was right that something was hurting Jackson.  It’s always a guessing game with a special needs kid.  The nurse came in to our room, handed me 6 diapers and some wipes, gave Jackson an enema and left.  This is where our ER visit suddenly becomes America’s Funniest Home Video material.  I know what an enema is, I’ve heard the jokes, but I’ve never witnessed one before.  Not 30 seconds after the nurse left I looked down at Jackson whose diaper was leaking poop down his leg, up his back and all over his belly.  I jumped out of my seat, yelled a few curse words and tried to start changing his diaper.  For those of you out there who don’t know this – don’t open the diaper all the way, you’ll be sorry.  I was.  As I ignorantly opened the diaper, poop was shooting out of Jackson at an alarming speed and I was unable to contain it at that point.  God knows I tried!  Thankfully a couple of minutes later the nurse came into the room and quickly saw that I needed help.  She tried to help clean up the bedding but even she gave up after a minute or so.  Long, yucky story short, Jackson went through those 6 diapers in a little under 20 minutes.  It was a poop fest, a poop-a-mania, a party pooper.  It was disgusting.  But Jackson sure felt good and that made Mommy happy.  We came home, Jackson instantly took a bath, and I put him to bed where he was finally able to sleep peacefully.  The doctor gave us a prescription laxative to use for two weeks, that’s how long they thought it would take for all of the poop to come out.  Two days later Jackson began screaming in pain again so I took him back to the ER.  This time they suggested we put him on a bland diet and add milk of magnesia to the list of medicines to take.  That has seemed to help.  Having easily digested food doesn’t cause him as much pain.  Meanwhile we have had about a week and a half of some very interesting and smelly diapers.  Poor Jackson.  I’m just glad he is getting it out.  Another surprise about being a mom is that I would have never guessed that a poop explosion in a diaper would be cause for celebration.  But it is.  I’m cheering my boy on every time I get a whiff of stinkiness.  Go Jackson Go!  Get that poop out!

Biting Off More Than I Can Chew

When I was 14 I started spending my summers babysitting my 3 nephews.  It was the highlight of my teen years.  I loved spending the summer with those boys and some of the best memories of my life are of my wonderful nephews.  Growing up with them made me want to be a mom.  I dreamed of the day when I would have my 3 boys (well actually I hoped there was a girl or two in there) running around filling my home with laughter.  It took me a while to find the right man to marry and my journey into parenthood came a bit late.  Although my little Jackson has a bad brain, I still have a home filled with his highly contagious laughter.  But Kevin and I both want more than one child and since we are both adopted, we always planned to adopt.  That is what led us to the foster parent journey.  There are so many children out there that need homes and we have a pretty good one I think.  When we got the call about Lillie and Vivionna it seemed like a no brainer.  They needed a good home, we had one, they moved in.  If only it was that simple.  What we didn’t know was the extent of the trauma Lillie has suffered.  The effects of that trauma soon took over our home. This is where it gets difficult for me.  One the one hand I want to help Lillie and get her to a place where she okay.  On the other hand, I just don’t know how.  Nor do I have the time with a special needs child and a normal toddler running around.  And my energy level is close to running on empty.  I simply bit off more than I can chew.  So what do I do? 

Last week Lillie had a massive fit.  She yelled, slammed doors, and refused to move.  I had to call the social worker at 9 p.m.  I was at a loss.  She woke Jackson up, her sister was crying, and I was beyond exhausted because Kevin was out of town.  I finally got her to bed but by that point I had lost it myself.  I laid in bed until 3 a.m. contemplating what to do.   It came down to the decision that I was not equipped to deal with this.  Everyone keeps reassuring me that I am making the right decision – the social worker, the counselor, other foster parents. All I feel is failure and disappointment.  I am letting Lillie down and that is just not what she needs, another adult failing her.  I’ve cried a small river over this and can’t stop wrestling with my decision.  The social worker can’t find another home for Lillie because of her high needs so she is still with us.  This week I have two appointments with specialists to help deal with her behavior.  I think she senses I am at my wit’s end.  Since her meltdown she has been behaving beautifully, which makes my decision even harder.  I wonder if she is finally coming around and realizing our home is a safe place for her or if she is just backing off for a while and we are going to be in the midst of another meltdown any minute.  Living with the uncertainty of what will happen every day when she gets home from school is very wearing for me. 

Jackson has had some difficulty with the changes in our home too.  He has started waking up in the middle of the night screaming.  He seems afraid at times to go to bed.  He gets over stimulated with the louder noise level in our home.  He doesn’t have my full attention anymore and I know that is hard on him.  It’s equally hard on me.  Sometimes I feel so sad that we don’t have our time together anymore.  I miss that.  I love Jackson so much and I need to make sure that he isn’t affected negatively.  He already has enough cards dealt against him.

I’m not totally ignorant.  I knew going into the foster parent process that there were going to be tough times and broken hearts.  There is simply no way to prepare yourself for it though.  William Cowper said "The only true happiness comes from squandering ourselves for a purpose.”  I hope that someday down the line I will find that happiness and realize all of this was worth it.  Right now I can’t.

Coming up for air

I recently saw a quote by Tolstoy that made me laugh to myself.  It said:  “True life is lived when tiny changes occur.”  Well considering the most recent changes in my life (which are NOT tiny) I am certainly living!  Living the life of a chicken with her head cut off.  The life of a marathon runner.  The life of a CEO.  You get the picture.  Our foster daughters have now been with us for 2 weeks and I am sure things will settle down soon (see I still have my sense of humor).  The girls came with a few stuffed animals, books, and blankets.  Pretty much no clothes that fit, no diapers, and no toiletries.  I remember thinking I was prepared and ready for some foster kids.  Boy was I wrong.  Getting clothes that fit them took over a week.  Getting all the paperwork, phone calls, and appointments they need is something I am still working on.  Every day something comes up that seems to be an emergency I have to deal with.  I’m exhausted.  And shopped out.  Clothes, groceries, double stroller, Halloween outfits, potty (for the 2 year old), a princess kitchen and play food, more clothes, more groceries, toothbrushes, and a new car.  All things I’ve had to buy in the last two weeks.  Anyone ever went car shopping with 2 toddlers and a 9 year old?  Meltdown city.  And I am talking about me, not the kids.  Just ask my husband, it wasn’t pretty.  But we are finally getting somewhere and settling into a routine.  The girls are opening us to us more and more and we are finding out how sweet they are.  They both have some anger issues but are handling them pretty well.  They love Friday Pizza and Game night.  So do I.  It is fun to hear their laughter and watch my husband chase them around the house.  It’s been a little hard on Jackson, which has made me cry a few times.  I know he misses his Mama’s 24/7 attention and I miss giving it to him.  I’ve had my moments of missing my little family.  It’s definitely been an adjustment.  But this is what Kevin and I wanted, a house full of kids.  That comes with all the ups and downs we are facing.  Yesterday the woman who has been transporting the girls to their parent visits said to me “You just don’t realize what you have done for these girls.  They are happy, laughing, and talking.  They weren’t like that before they came to your house.”  I needed to hear that.  When fits are thrown and dirty looks are thrown your way it starts to weigh on you.  To hear someone who knew the girls before say that we are doing something right gives me some hope. 

My life is nowhere near what I thought it would be.  I’m a stay at home mom of a child with special needs and 2 foster children, who now drives an SUV.  Life is definitely full of surprises.  Some happy, some not so happy.  The trick is finding out how to respond to those surprises that enables you to move on with life.  Something I am learning, surprise by surprise. 

Check this out!

If you have 5 minutes (you know you do) check out this video.  The little boy, Aaron, has bilateral polymicrogyria.  Jackson has unilateral polymicrogyria.  Aaron is so cute and this video makes me smile every time I watch it. 

http://www.youtube.com/watch?v=M6qAxMXu9N0

Where’s Jackson at?

Lately a lot of people have been asking me how Jackson is doing so I thought I would give you all an update on the kid.  Where to begin?  Well first, Jackson is incredibly adorable (bragging mom moment), as most of you already know.  Other than that, he is still seizure free (yea!).  He hasn’t had a seizure since April 25^th at around 8 a.m.  Now that his brain has had a 5 month break, we have been able to enjoy the little boy that Jackson is.  And let me say he is a silly little boy who is happy and giggly and cuddly.  He is still making progress, although slowly.  I think I had this idea in my head that once the seizures stopped Jackson would just take off developmentally and that hasn’t really been the case.  He is making strides, but not quick enough for this impatient mom.  He is definitely more alert, focused, and active.  But he still has his moments of what I call “blah-ness”.  He’s just kind of in a blah mood and not too excited.  It’s hard to get him to do anything during these periods.  He is doing much better during his therapies though.  Whereas before when he had seizures he would fuss and complain during therapy, now he is much more patient, laughs at some of the things his therapists do with him, and actually participates.  Big improvement.  Jackson is sitting for much longer periods of time also.  He still can’t get into the sitting position by himself.  I, however, think he can get into the position he just isn’t motivated to.  That is one “problem” with Jackson - his lack of motivation.  He is just kind of a laid back kid and I think he knows that Mama or Dada will get him into the position so why bother?  Getting him motivated has always been an issue.  He can also stand very well on his own now (once we stand him up) but you have to keep a light hand on him or he will fall over.  And he is standing for longer periods of time.  His walking is a slow process.  Some days he will walk one foot in front of the other (with support), other days he just wants to jump up and down and won’t take any steps.  He tends to walk pretty well for his physical therapist but not so well for me.  Little bugger.  Sign language has been another progress for us.  He is signing “more” and “eat” and was doing “please”.  For some unknown reason has stopped signing please.  Which has left his speech therapist and I totally perplexed.  So we are working on “please” again.  One thing that has been fun is that he is learning how to drink from a straw.  Jackson is making good progress on this.  Drinking out of a straw may not seem like a big deal but it is.  Not having to carry a sippy cup in my purse when we go to a restaurant or grab some fast food on the run is definitely a bonus.  So that is where our boy Jackson is at.  Slowly, but surely, getting somewhere. 

As for where the Klim family is at, we are currently residing somewhere between overwhelming insanity and ordered chaos.  Last week Kevin and I officially became foster parents to two girls, Lillie is 9 and Vivionna is 2.  Adding two more to our little family has proved to be a tad bit challenging and rewarding.  The fact that the girls came with pretty much what was on their backs and not much else has added a sense of urgency and necessity to our daily lives.  We are finally getting them settled clothes wise and that is helping.  They both seem to be adjusting fairly well and are very sweet girls.  They’ve been through a lot and we are just glad we can provide them with a sense of security, safety, and stability.  Oh and some love.  Jackson has had a little trouble getting used to not having Mommy 24/7 but he is starting to get used to his new household life.  And for the first time since Jackson was born, chicks outnumber the dudes in my house!  Finally!  We have a long journey ahead of us as foster parents, so wish us luck!

Why does everything have to be so difficult?

Lately it seems to me that everything I try to do for Jackson is difficult.  Get him a bed – difficult.  Get him diapers – difficult.  Get him an appointment at Seattle Children’s Hospital (been working on this for 3 weeks now and still no appointment) – difficult.  Some days I just want to scream at the top of my lungs.  It seems to me that those of us who have a few more struggles with our kiddos should get some kind of “cut in line for free” card that makes things a little easier.  Yeah, right.  I suppose this is why we are “special” parents.  We learn to accept that everything is going to be difficult and that it will just be a way of life for us.  Like last week, I was on hold for 47 minutes to talk to a Medicaid employee.  When someone answered I was just so happy to be talking to a real person that I didn’t even get upset when she told me she couldn’t help me and that I would have to call another department.  Which of course entailed another long wait on hold.  Despite all this, I am reminded every day how lucky I have it.

Just turn on the news and you see the stories of our fellow Americans who have lost their jobs, homes, and ultimately their hope.  There are parents who have nowhere to go with their children.  Kids who don’t know where they will sleep every night.  Now that is difficult.  I can’t imagine what those families are going through.  Times are really tough in our country right now and I think for most of us who are doing okay we forget that.  It’s a little overwhelming to think of all the people that need help that live right by us.  And what about the military families?  Now they are heroes.  They leave behind their wives, husbands, children, parents, to serve for our country.  Whether or not you agree with the reason we are over in other countries is beyond the point.  The point is that we are over there and families are left behind.  I have no idea how some of these military wives do it.  They are alone, raising the children by themselves, going to bed every night wondering if their husband is going to come home alive or in a casket.  That kind of constant worry is beyond my comprehension.  Even though I may have to deal with a lot of phone calls, being on hold for long periods of time, fighting medical companies, and exploding buildings, it really is nothing compared to what others are going through. So tonight when you go to bed do what I do, rejoice in the fact that you have a bed, a warm house to sleep in, food in your cupboards, and that your family is safe.  That is all that really matters in the scheme of life. 

All I can do is Laugh!

When the Department of Developmental Disabilities caseworker came to do an assessment for respite care for Jackson she mentioned that because Jackson was 3 years old the State of Washington would buy his diapers.  So it took me a couple of weeks but I found a place (Norco) that would supply the diapers that Jackson has worn since he was 3 months old (Huggies).  However, they charged the State over 4 times what I would pay for the diapers in the store.  So when I called them to get our second supply of diapers they informed me that they would not provide Huggies because the State would not reimburse them due to how expensive they were.  My response to them was that if they didn’t charge ludicrously high prices the State would pay for my son’s diapers.  The guy on the phone said that they didn’t charge high prices, they charge what they pay for them.  Yeah right.  So I told Norco I would take my business elsewhere.  Again I was on the hunt for a company that would supply diapers.  I must have called 10 companies only to be told they either weren’t taking new clients, didn’t supply diapers, or were unable to deliver to the Spokane area.  But after a couple of weeks of calling I did find a pharmacy in the Valley that would supply diapers but not Huggies.  I looked up the name of the diapers they would supply and they seemed okay.  I decided we will try the diapers and if they give Jackson a rash or are super cheap then we at least tried.  Thursday I went to the pediatrician’s office to get the required prescription.  Friday I headed out to the Valley with two toddlers (Jackson and the little girl I babysit) to the pharmacy.  I filled out the paperwork (fun times with two kids to manage) and left the pharmacy because it would take a couple of days to get the approval from our much beloved insurance company Molina. Finally, after a couple of weeks of calls, paperwork gathering, and a trip to the pharmacy we are finally lined up for diapers.  At this point, you are probably wondering what the point of this post is and would I please hurry up and get to it.  Here it comes.  This morning (Monday) I go into my bedroom to get dressed.  My husband is in bed watching the local morning news.  As I get dressed I am listening to the news.  The breaking news this morning was that an office building exploded and caught fire.  (Can you see where I am going with this?)  As I look up at the TV, there it is, the building that exploded and is on fire.  The same exact building that housed the pharmacy we went to on Friday!  You may be thinking “What are the odds of that happening?”  That was exactly what I was thinking!  I’m going to say the odds are 1 in 18 million.  But I could be off.  After a few minutes of oh my gods and thinking of all the time it took me to get the diapers ordered, I finally just threw my hands up in the air and laughed.  I mean it really is kind of a funny story.  It has given me quite a few laughs today.  Of course the evening news covered it as well so I had a flat out laugh fest this evening around 6 p.m.  So what’s next?  Who knows!  My guess is that my paperwork is ashes and unless they backed up their computers off-site the pharmacy will not have any records of us.  But the good news is that we just got coupons from Costco and there is one for $6.00 off Huggies.  So if you see me in Costco buying Huggies diapers come over and laugh with me. 

Back to Crazy

Where does the time go?  Seems like I just put a post up and then I realize it’s been 2 weeks!  We’ve been busy enjoying the last of our summer.  Trips to the park, a long 3 day weekend of camping, painting the inside of the house, and working in the yard has consumed our days.  But life headed back to our normal routine today when Jackson started back to school.  Of course, the start of school was not without some drama provided by the extremely unorganized, unprepared and downright ridiculous Spokane Public Schools administration.

Last year Jackson attended Roosevelt Elementary.  It is not our home school, but that is the only school that had room for Jackson.  They offered to bus him to the school but I refused that since Jackson was still so young and not used to going to school.  But I told them last year that this school year I would like him bused.  No problem they told me.  I also told the social worker, the woman in charge of transportation and the special education department that I would drive him to summer school since he was going to a different school for the summer that was on the other side of town.  What do you think happened this summer?  Yep, the bus kept showing up at our house every morning.  Finally after me telling them a couple of times, and my neighbor telling them a couple of times, the bus finally stopped showing up.  So as school approached this year I called the transportation department to find out what time they would pick up and drop off Jackson.  They said they had no record of Jackson and had no idea what I was talking about.  So I called the special education department, talked to the secretary there and put the request in.  A couple of weeks went by and I still hadn’t heard anything so I called again but couldn’t get a hold of anyone.  Then Jackson’s teacher at Roosevelt called to invite us to an open house and mentioned that the school district had me down as driving Jackson myself.  I told her no, I wanted him to take the bus this year.  She said she would look into it.  Meanwhile, someone from the school district administration calls me looking for “Stacey Jackson”.  I explained my first name was Stacey and my son was Jackson.  She was very confused.  At this point, I am getting pretty annoyed and on the verge of saying some not so nice stuff. Then she asks me if I have ever heard of a child named Jackson Klim.  Seriously?  Um yeah, I gave birth to a kid by that name.  She then proceeds to tell me that Jackson will now be going to Sheridan Elementary because they have room for him there.  Say what?  I explained that I just talked to his new teacher at Roosevelt and we are all set to go there.  She tells me that if I want Jackson bused then he has to go to Sheridan.  After a few minutes of back and forth I finally say something to the effect of “Look lady, you people at the district office seem to have no clue what is going on.  Jackson’s only been in your school district like 2 months and I can’t even count the mistakes you all have made.  I am so pissed off right now by your incompetence that I am hanging up on you.”  And I did.  Then I called Kevin to talk me down.  Which he did.  Then I made a few calls to some people at Roosevelt to see what we could do.  Basically it came down to this – I drive, Jackson goes to Roosevelt; I want Jackson bused, he goes to Sheridan.  So last Thursday (2 school days before school starts) Kevin, Jackson and I go to both Sheridan and Roosevelt to meet the teachers.  As we walk into Sheridan we are greeted by the teacher.  I know her, she was Jackson’s summer school teacher.  I don’t remember if I ever blogged about his summer school teacher.  So here’s the gist – I can’t stand her.  She isn’t warm, friendly, courteous, or kind.  I nearly pulled Jackson out of summer school because I couldn’t stand her.  Almost every day I picked him up she would say “He was grouchy this afternoon” and I would say “It is too long of a day for the little ones” (Spokane Public Schools saves money by condensing summer school classes into two days a week, 5 hours a day, without regard to the fact that that is too long of a day for special needs kiddos) and then she would say “Well it’s a long day for me too”.  Yeah, she’s a gem.  So right away Sheridan and bussing is out.  We then went up to Roosevelt to meet Jackson’s new teacher Liz.  She was great.  She was warm, friendly, courteous and kind and had all sorts of ideas on how to best teach Jackson and make his learning experience beneficial.  So I’m driving Jackson to school this year.  I am fine with that.  Having a sense of mind that your child is in the best situation to help him learn is worth the 2 hours of driving per week.  And picking him up and seeing the smile on his face because he was happy at school just makes my cup runneth over.  He had a great first day and was in the best mood ever when I picked him up.  The kid loves school, just like his mama. 

So summer is over, school is back in session, a new therapy schedule is in place, and the craziness will take over our life again.  Despite all that, I am back to having a couple of hours of me time in the morning.  I can hear the Rockwood Bakery calling my name.  Reading, writing, eating scones and drinking hot chocolate in the neighborhood bakery is this mom’s delight.  Oh I just love the school year!

What is Left Unspoken

Imagine you wake up one morning and your _____ (enter husband, son, daughter, mom, dad, brother, etc.) could not talk.  They also could not write.  Nor point.  Nor walk.  They can’t even use any kind of body language to get their point across like shaking their head yes or no.  How would you know what they wanted?  How would you know what was wrong with them?  How do you think they would try to communicate with you?  It’s a tough one isn’t it?  Welcome to my world with Jackson.  Some days it is frustrating.  Some days are infuriating.  Some days I just want to scream and cry “Why?!”  Other days we somehow get through the day by doing a lot of guessing and some assuming.  But things are changing here in the Klim house. Jackson is finally starting to learn sign language.  We are slowly getting somewhere.

Many moons ago I got it in my head that it was time to start teaching Jackson sign language.  That project lasted about a week before I gave up.  I just didn’t think he was ready.  Plus he doesn’t use his left hand or arm very much, if at all, because of his brain malformation being on the right side.  So I determined he couldn’t do sign language and that was that.  Maybe he wasn’t ready then, who knows, but he surely is ready now.  Many of you may remember my previous post about that damn “more” button.  The fact that Jackson caught on to the purpose of the button so quickly showed us that he was ready and willing to communicate.  So we altered the “more” sign a little (he pats or bangs his open right hand on the table or his leg to indicate “more”).  He did so well learning that sign that we then moved on to “eat”.  It is another sign that you only need one hand/arm for.  For those of you who know Jackson and his insatiable desire for food you can imagine the very short period of time it took for him to learn this sign!  I would say it took about a day, maybe two.  This one sign though has really changed our world.  It has given Jackson a voice and I personally think it has given him some self esteem and confidence.  I used to have Jackson on an eating schedule because I just didn’t know if he was hungry but I also had to ensure he was getting enough to eat every day.  Now I am able to let him tell me when he wants to eat.  However, he loves food so much that sometimes after I get him out of his highchair after eating he won’t even wait 5 minutes before he is making the “eat” sign again.  Nice try Jackson!  I think Jackson would be happy just sitting in his highchair all day while I continually put food on his tray.  So the “eat” sign has been a success.  Now we are working on the “please” sign.  This one is a little harder.  But he is slowly getting it.  Our trying days are not over, but they are getting better.  Jackson being able to communicate in at least one way with us is helping him become less frustrated which makes me less frustrated.

Another thing we are using is pictures.  I have taken pictures of toys, people, strollers, swings, and some food.  Getting him to recognize pictures and associate them with real objects is important for him to be able to make choices.  For breakfast every morning I show him a picture of French Toast and a picture of a bowl of oatmeal (I took the pictures of real food).  I then ask him what he wants for breakfast “Do you want toast or oatmeal?”  Then I wait to see if he (1) looks at one of the pictures and (2) touches the picture he is looking at.  If he does then that is his choice and that is what he has for breakfast.  If he doesn’t make a choice within a couple of minutes I make a choice for him and touch his hand to the picture and say what it is.  He usually makes his own choice and it is pretty awesome!

Jackson’s speech therapist has sent a request off to the insurance company to purchase a communication program called Proloquo2Go for his IPad.  She has used it with him in therapy and he picked right up on it.  It already has preloaded pictures but you can also add your own.  You put the pictures on the screen and Jackson can touch what he wants.  For example, his speech therapist has done a split screen with a picture of water on ½ the screen and a picture of goldfish crackers on the other.  She shows it to Jackson and he has to look and touch what he wants (water or goldfish).  When he touches the one he wants the program will talk and say “water” or “goldfish”.  That way he is hearing the word and seeing the object and making an association.  And he is able to tell us what he wants, not what I think he might want.  This program is pretty amazing and a lot of non-verbal children and adults use it as their sole way to communicate. 

We are definitely making progress in the communication department.  It is just a start though.  We have a long way to go.  I have to say that seeing what Jackson is capable of has made me feel like I have underestimated my boy.  I really didn’t ever think he would pick up signing like he has and I truly never thought he would use the communication program on the IPad as well as he has.  I just didn’t think he had the cognition to do it.  Again the kid has proved me wrong. I sincerely hope that Jackson spends the rest of my life making me look like an idiot by proving me wrong and surprising me.  I really, really do. 

Reviving Respite and Foster Care

Back in May I found out we qualify for 67 hours a month of respite care.  Basically that means that the State of Washington will pay someone to come into our home to take care of Jackson while I do whatever I want or need to.  It took me a while to wrap my head around that.  I felt kind of weird about having someone take care of Jackson when I can do it just fine.  There are definitely days where taking care of him is a lot of work.  But that goes for every child out there, special needs or not.  I’d be more than happy to give my hours to some single mom who never gets any time to herself.  Unfortunately it doesn’t work that way.  So after a lot of “You should do it!” from friends and family, I decided to go for it.  I wanted to interview someone first before they started taking care of Jackson.  The first girl I interviewed wasn’t a good fit.  I didn’t like her personality and couldn’t imagine her working in my home.  The second girl, Heather, was great.  So for the last 3 weeks now Heather has been coming to our home and caring for Jackson.  The first two weeks she just came one day for 5 hours.  This week she came two days for 5 hours each day.  Am I liking it?  YOU BET!  I can’t believe how much I get done.  Phone calls, grocery shopping, errands, household chores.  I like it because Jackson is still here with me and I can stop anytime and give him some love.  Along with all the little things I get done I have a couple of big projects I am working on.  First I am refinishing my Dad’s dresser and once that is done I am going to finally paint some of these brown walls in my house.  The last piece of furniture I refinished, the dining room table, took me 11 months.  I just never had time.  At my current rate of working, when Heather is here, the dresser should be done within a month.  It still feels a little weird having someone take care of my little boy, but he really likes Heather and it is good for him to have interaction with other people.  Another good change in our routine.

As some of you know, Kevin and I have been trying to get licensed to be foster parents.  In June we finally started the process.  We turned in the required paperwork, have taken the 27 hours of training classes, bought bunk beds and redecorated the guest room, and just last week had our first home visit.  We have a few minor changes to make to the house – latches on low cabinets, lock on the medicine cabinet, buy some kids’ clothes and toys, etc.  The licensor will be back next week for another visit and inspection.  If everything goes well we should be licensed by the end of August.  I’m nervous and excited.  Our ultimate goal is to adopt and grow our little family.  It may take a while to get our forever family, but I know that out there somewhere there are some kiddos waiting for a mom and dad just like we are waiting for them.  They may be 3 years old, they may be 17.  Either way, their room is waiting for them. 

Giving Up

For those of you following my fight against Molina Healthcare to get a bed for Jackson, you should know I have decided to give up the fight.  It wasn’t an easy decision but one I am actually pretty relieved about.  A couple of weeks ago the attorney in Seattle who was taking Jackson’s case called with some interesting/good news.  She had found a way to get Jackson a bed that was pretty foolproof.  Although it was foolproof, it wasn’t easy, and was extremely time consuming.  Her advice was to ask for a continuance for the Administrative Hearing that was already scheduled, go through the lengthy process, and see where we were then.  As I talked with her and took notes about the process, I really started thinking about why I was doing all this.  Jackson now has a beautiful, safe, awesome bed.  Our problem has been solved.  My motivation was to give Jackson a voice in court and let Molina know that their members are not just numbers, they are people, and they have a responsibility to them.  And I still think that is important.  However, I also think my time and energy could be better spent playing and working with Jackson.  Dragging him to more doctor appointments, filling out more paperwork, and making more phone calls is not the best way to spend my time with him right now.  So I am giving up.  Perhaps I am now part of the problem, another person giving up the healthcare fight.  But it turns out in the end Molina wouldn’t have bought the bed anyway, the State of Washington through the Department of Social and Health Services would have bought it.  One good thing has come from my giving up though.  I now know the process to get a bed for a special needs child and I can share that information with other parents who don’t have Dwight’s (the man who made Jackson’s bed) in their lives.  Now I can spend my afternoons in the park swinging Jackson or in our backyard sitting in the pool with my boy.  Exactly where a Mom should be on a nice summer day.