Persistence

It is that time of year for Owen. Doctor appointment after doctor appointment. ENT, Hearing Tests, Eye Tests, Dental visits, Orthopedist, Pediatrician, Sleep clinic, the list goes on. Some appointments are tough, some are encouraging. Owen hates them all, especially if you call any one of them a "doctor" so we resort to just calling them Ms or Mr. That helps - sometimes.

Last week was his hearing test and ENT follow up. After another surgery to replace the "permanent" tube his hearing tests show he is back to the mild loss range which is good. Just a month prior he was falling into the moderate range. We are thankful to see the difference a tube can do to help his ears hear better and prevent infections. As much as I hate these surgeries, I am glad we pushed for a new tube!
While he was under for surgery they also did another scope of his trachea to see if after 2 years it has improved. Result...no improvement. Still showing the size of a 1 year old and his tongue is still shows it causes obstruction. We had hoped with time it would have grown but the results were that it is showing no signs of improvement. Bummer. Looks like Owen will need his CPAP for life :(

This week was his sleep clinic follow up. He has had his CPAP for about a year now. Over time he has adjusted to wearing it more at night. The last report we had about 6 months ago it showed he would keep it on for a max of 2 hours and now he gets up to 5-6 hours at a time! We still struggle to get it on him. He fights a little but once it is on it he falls right to sleep.
CPAP is hard to deal with especially since Owen doesn't really understand why we push it. It was refreshing to sit with the dr. and have him thank us for our persistence. His ENT and sleep dr. really didn't think his sleep was that bad. But we pushed to get them to do the testing again and make sure they saw and understood what we saw. He said we were ahead of our time and he has now changed the way he approaches situations like ours. I am thankful we pushed. Thankful that it has helped Owen and thankful that it was able to change opinions and treatment of others. Owen was even rewarded a gift card from the dr. because he has been doing so well.

Along with all the dr. appointments that happen this time of year it is also a big time for us to reflect on our journey. Although sometimes it seems overwhelming to keep up with all these things, I am thankful for the supports Owen has. Ear tubes, hearing aids, Orthotics, CPAP, Thyroid meds, physical therapy, speech therapy, occupational therapy, special education, paraprofessionals. I am thankful we live in a time that allows for all of these things/people to help him. To help him live such a successful life. To help him be happy. Sometimes we have to be more persistent to get him what he needs, but that is our job.

Birthday Girl

4 going on 14.
She is wise beyond her years and has been so excited for her birthday this year. Not because of the cake, party and presents but because it meant she was going to be older. Really who wants that?
This girl...

She wants to grow up and be like mom. She wants to be 5 so she can chew gum. She wants to go to the big school with Owen.
I want her to stay in this moment. She is fun, cute, sensitive, smart, sweet and just a joy to be around (most of the time).
Her favorites include donuts with sprinkles, chocolate milk, stuffed animals, purple sprakly dresses, clothes with patterns, mismatched socks, shoes, shoes, shoes, pretty nails, homework, making bead bracelets, going shopping with mom, being with mom. I have to admit we are quite a pair - she loves to tell me "Mom I have a secret - You are the best mom in the whole world, forever". Melt.my.heart.
I need to start writing down the funny things she says because they are certainly priceless.

For her birthday she asked for a Purple Barbie Princess & Popstar cake - with polka dots.
So how can the best mom in the whole world, forever - turn that request down?

We also ventured to the build-a-bear shop for a party with some of her friends. She was excited to have her friends together. It was a fun set up for them to make their bears together. I did ask her if she wanted Owen to be included since he would be the "only boy" and she said "um, yes because he gives the best hugs".

Can't believe she is 4. It seems like yesterday she was cooing and learning to sit just like Zoey is now. It goes quick. Too quick. Enjoying each day. Praying our next set of results in December are going to be just fine. Excited for what the age of 4 will bring.

Six Months!

How has the time flown by so fast! Maybe a little sleep deprivation, juggling acts, and a loss of all control has been where we have been.

Zoey's life so far...
She had things a bit tough in the beginning. Coliky comes to mind but thankfully that is all a thing of the past and now we are left with the sweetest of babies. She is patient (most of the time) as Owen and Olivia need more attention. She goes to bed easily on her own. She could however work on her sleeping through the night skills. But with time it will come. She is strong, she is happy, she loves to babble, stand, play with toys and giggle.

Her Stats at 6 months...

Weight: 14 lbs 4 oz (17%)

Height: 26.8 in (86%)

HC: 16.5 in (34%)

Long and Lean

 

She has started a few new adventures this month. Attempting to sit and starting solids. She is also VERY close at army crawling and loves to stand. She is one tough girl!

 

 

Owen is still very much in love with her. Loves to hold her, do little dances to get her to laugh, try to calm her when she is upset and loves on her at every chance. Sometimes a bit too much which is why she has now had 2 colds & ear infections in the last 2 months.

Olivia is still warming up to the fact that there is another person around to take away her attention. She isn't the biggest fan of babies. But if I am talking to Zoey, Olivia will jump in and try to get her to smile as well. Soon enough they will be playing side by side singing and laughing!

 

Three has definately been a shift in control around here. But it is all about ages and stages and right now each of them three still need quite a bit of attention and support throughout their days so when we are outnumbered it does seem a bit amplified. However, I wouldn't change it for the world.

We cherish every need, watch every milestone with great enthusiasm and are thankful for every minute we have together.

New Schools

We are trying a new school this year for Olivia. She wasn't excited about school last year in the program she was attending. Very sad each day she attended so we stopped for the summer and started looking for a new fit. We toured a few places and decided on a preschool associated with a local church. It was a good fit for all of us since they allow for a full day program and flexibility on days. For two working parents that is just what we needed.
She was nervous her first day but didn't hesitate letting go of my hand as we walked in the room. I knew it was a good sign. She used to cling to my leg and often cry at the old school. We made the right choice.

Of course Owen loves to support his little sister. Giving her encouragement. Walking her to class. Helping her be brave. What an amazing pair!

She attends 2 days a week and each morning she asks if she gets to go to school that day. She is really enjoying her time there. So much so we might have to increase her school days to 3! Her teacher is great and I am so proud of how well she is doing.

She loves to learn and loves to work. She asks daily if she can do homework. She sees the work we do with Owen and wants to do it to.
Work like cutting and writing is hard for Owen so he often avoids it. I am thankful that Olivia likes it so much so we can show Owen that it can be "fun". Some days it works. Some days it doesn't but having someone to model for him is a huge help.

 

 

We also enrolled the kids into Sunday school this year. Hoping Owen would be old enough to be able to participate and not be too much of a distraction. Due to so many busy fall weekends we have only made it to one class. But they both did very well and I am excited to get them to be part of the program. Best part is one of Owen's classmates from school is in his Sunday school class!

 

A sense of style

It has been a few months since Olivia started getting dressed countless times a day. There isn't a day I go in her room and find all the clothes from her drawers strewn across the floor as she tries to find the perfect combination. At first it was nice because I could give her the task in the morning and I didn't need to assist. But now it is just silly what she comes up with - and her room is always a complete disaster!
She hopes people will notice her creation. Anytime we are going somewhere she asks if I think they will notice how beautiful she looks. Do you think they will like my tights? Do you think they will like my crown? Do you think they will notice my skirt?...
She also makes it a point to compliment people (sometimes strangers) about their clothes, their nails, their hair. So a tip to anyone meeting her - make sure you notice - make sure you tell her how beautiful she looks.

 

 

Always a skirt. Always a patterns. Always adorable.

Balance.

Life. Parenting. Love. Work. Fun. Balance seems to be our biggest challenge. Trying to prioritize. Trying to figure out where to put your energy. Trying to figure out what is most important in the moment. I can't seem to find the instruction manual on this one and if I did, I know it would change as soon as I could figure it out. We have to take it day by day. Sometimes minute to minute. This is the story of our life.

We make decisions for ourselves.

We make decisions for our kids.

We make decisions for our family.

I find lately that all I do is worry about balance.
First grade has brought on new challenges and new adventures. We will always focus on Owen's goals but we also want him to be part of his class. This definitely causes conflict to figure out how to adapt to the different levels.
Are we pushing too hard? Are we trying to cram too much in? If I take the cues from Owen on a daily basis, the answer is yes. It is all too much. But how will he grow, how will he learn, how will he succeed? We have to push. Thankfully at the end of the day he still tells us he loves us. We can get him to smile no matter how upset he is with the routine he has.

The first few weeks of school are hard. It is hard to find the right adjustments to make it all fit together. It is hard for him to understand all the change. Add on top of that there is therapy after school, being sick and homework.
But I know he is excelling in school. He is happy there. He has wonderful teachers helping him through the challenges and also trying to find the right balance for him. It may just be 1st grade for some but for us it is more. It is a bigger challenge to balance.

A new diagnosis

We've secretly been stressing about a potentially serious health concern for Olivia for the last month and a half. I won't get into all the details but there were multiple signs of puberty showing up and obviously that is not normal for a 3 year old.
Multiple trips to the doctor, on to specialists and off for tests has been our journey since mid July. It has been a waiting game until last Friday when we finally got the official diagnosis "benign premature adrenarche". Sounds scary but actually it is a huge relief becuase what could have been or what it could develop into is potentially very serious. Basically what it means is her adrenal gland is the culprit for now. Her bone age is also showing further advanced than it should so she is growing too quickly. There is no treatment now except to treat her symptoms and do more testing in a few months. Tylenol for leg pains, deoderant for body odor, etc. Never thought I would be in the deodrant aisle looking for a fun smelling, fun looking stick of deoderant for a 3 year old! Luckily the one I picked has her excited and she now asks for me to put it on her.
We have been worried, scared, and reliant on doctors to give us answers. It has been another hard test for us to go through. We learned once again how frightening it can be to google symptoms and potential issues. We learned how scary things can seem when there is so much unknown.

We pray that this doesn't turn into the seriousness we have read about. We pray that Olivia doesn't notice the differences. We pray that we caught this early.