December

It has been quite awhile since an update, due largely in part to my new found addiction to instagram. But I received quite a few requests for an update from my biggest fan of the blog (my brother-in-law) so here we go.

December has been beautiful thus far. We have our tree up and just like Christmases past, we are only able to keep the top 1/3 decorated. Any lower and Luke the destroyer has his way with it. He has succeeded two times thus far in unraveling the bottom string of lights.

Decembering

My fellas hanging the lights

Luke the Destroyer

Max turns 4 in one week and we are taking him to the Greatwolf Lodge for an overnight with my parents, his brothers, and his cousin. They will have their own little cabin to bunk up in and I am excited to see their "Snow land" festivities they have every year. Max is at a very healthy point at this moment in regards to his immune deficiency. He made some antibodies to a vaccine after a miserable week of pneumonia and fevers climbing to 104. He is still on continuous antibiotics but is much happier, more vocal, and sleeping more soundly. Can't wait to celebrate with him on his big day.

Noah's loving school and recently got an award for "consideration." That word sums him up so well. He is the sweetest boy and there are days I would be run over by the other two if I didn't have his help. He can write, he can read, and he is so loving. So very proud of him.

Luke is still my baby but growing everyday. He has more and more words to share with us every day when we succeed at removing the binkie from his little death grip. He is through and through a mama's boy and lately will cry and throw himself to the ground when I leave the room. I roll my eyes and act exacerbated but truly love these little antics so much.

As for myself, I recently got some not-so-great news about my back. I was diagnosed with ankylosing spondylitis (an arthritis that attacks the spine) seven years ago. I did a year of treatment at Harborview where my husband served as my nurse administering injections into my rear. Shortly after I became pregnant with Noah and my symptoms went away, as is the case with many forms of arthritis. Thus my frequent pregnancies that spanned the last six years made my condition all but obsolete. A few weeks ago I had surgery that somehow set off a flare up. The pain has been awful and my doctor, who is wonderful, said that my immune system is attacking my body leading to the chronic inflammation and the deterioration of my lower spine and right sacroiliac joint. The plan is to see a Rheumatologist in four weeks time and likely start Methrotrexate (a chemo drug). I have done similar treatment before and am not looking forward to the side effects they bring. But at the same time it has been a very emotional week with the tragedy in Connecticut making me all too aware of the four blessings I have in this home and the motivation to do whatever it takes to be healthy for them.

My favorite thing that happened in 2012 was to watch my two oldest boys become the best of friends. They do everything together and love now more then they fight. They choose to have sleepovers nightly and love to be pirates and  ninjas hiding out in their forts.

Many exciting things to come in 2013, with this week being celebrated with Noah's first Christmas Pageant (he is a wolf, don't try to find his character in the bible though), the trip to Great Wolf Lodge to celebrate Max turning four, making Gingerbread Houses at Noah's school as their room mom, a party at Max's school on Friday, and of course Christmas! I know this will be one of the best Christmas's yet. It is so magical when your kids believe in Santa. Will focus on the good things to come, and pray for a healthy 2013 for all.

Blessings to you and yours.

Ordinary Days

Today I'm grateful for ordinary days. Max has recovered from the pneumonia and will be on antibiotics through the winter to prevent an infection like that reoccuring. He received a vaccine at the hospital and will have a blood draw in 4 weeks to see if he produced any antibodies to it. If he does not, and his IGG levels do not improve, then he will likely start transfusions. If he does produce antibodies and his levels rise, they will feel more comfortable watching him longer and continuing to treat him with antibiotics. I pray that is the case and he doesn't have to do blood transfusions every 3 weeks. Would be so much for his little body to go through. At the same time, I am grateful there is treatment available to us, for many childhood diseases this is not the case. 

Max's pediatrician thinks it is ironic that the one antibiotic that heals him, Zithromax contains Max's name in it. 

I think it was a little gift from God.

I love our mornings. 

One by one they wake up, come downstairs and end up on the couch in various states of lounge.

I especially love the mornings where we don't have to rush to get the boys to school.
After their morning lounge they have breakfast and migrate as a pack to the toy room.

The days when the bigger boys have school I leave Luke in his pajamas as long as possible.
To me, there is nothing sweeter in life than the sound of his pitter patter in his footed jammies puttering around the house.

Our fall and halloween decoration are up and Luke is enamored with the pumpkin man outside our door.
He is convinced that it is someone coming to visit us
and tries to open the door for him several times a day.
I'm thinking of relocating him after the near heart attack I experienced
stumbling down the stairs late one night with a sick little one
and thinking there was someone peering in my window.

I am thankful for these ordinary days. I try to savor the moments so that I don't forget. No doctors appointments or crises to attend to,
nowhere we have to be but here.

Update on Max

 

It started 10 days ago with Max having a fever of 104 +. 

The high fever lasted for 7 days. His doctors thought it was initially a virus but as the fever persisted they concluded that it had turned into pneumonia. He was started on Zithromax (the antibiotic he has proved not resistant to). Today is day 10 and we are hopeful that he is starting to turn the corner. 

His temp today is 100-101. He is not eating but is now drinking well. His spirit is much higher today and he is enjoying bossing me around.

The emotional toll has weighed on me these last 24 hours. 

It crushes me that his small vocabulary now contains the words "I hurt," "I'm sick" and "I'm sad."

This is Max's first serious infection since he was diagnosed with immune deficiency. 

Until this point his immune deficiency had resulted only in repeated ear and sinus infections. 

Somehow those were manageable and the immune deficiency seemed like an annoying but not prevailing part of our daily lives.

We now know that his IGG levels have dropped from 400 six months ago to 300 last week. This is a big setback. After we get through this infection his doctor will put him on continuous antibiotics, at least through the winter.

Tuesday we take him back to the Immunology specialist at Children's to see if his levels and current infection are going to be manageable with the continuous antibiotics or if it's time to start intravenous immunoglobulin therapy.

Thank you all for your prayers and well wishes for Max. They lift us up.

strongest little guy I know

recently.

castle building.

cookie making.

rice krispie treat baking. we bake a lot of sweets together (it's the reason we have to do cardio together on the weekends).

brother love.

walking. nailed it. 

i wish my posture was as good as luke's.

my 3 boys in their various states (max, lounging).

homemade playdough. so much better smelling than store bought when you add spices.

art for two.

board games.

they will play tennis together for hours (thanks grandpa!)

nw trek.

forts. they love them. it's the boy equivalent of the spa.

shredding it with noah

Some days the only way I'm able to work out is to include the boys. 

Noah loves doing Jillian Michaels 30 day Shred with me because we modify it to suit him. When the circuit is boxing we pretend we're fighting the bad guys. When we do arm raises we are using our light sabers, etc. 

It makes me laugh (and anyone unfortunate enough to have to witness this) 

and we have fun doing it together.

Using out lightsabers

Sometimes he uses soup cans for barbells. Today he tried out granola bars.

Boxing the bad guys.

Max usually joins us for a set, tumbles into one of us and then leaves with the granola bars.

Good times.

picnic at the beach

The boys and I spent most of the morning yesterday baking cookies. 

They both are really good at measuring and mixing at this point

 but every job has to be shared between them so it takes twice as long. 

This morning we delivered batches to family and Geno's work 

(myself and the boys can't be trusted with large quantities of cookies

 in the house at one time...mostly me.) 

The highlight of the day was after the deliveries 

we were able to steal Geno away for a picnic at the beach.

A perfect way to put a little weekend into our weekday.