Today I spoke in church. The topic I was asked to speak on was seeking the spirit through our trials. I look at my trials at hand and today I feel grateful. Yes it's emotionally draining to live this medical life style but I will do it, and I will try my hardest to do it with peace and love in my heart. I am sad. I learned a few days ago that a fellow medical mommy & daddy were faced with the decition to withdraw support from their little guy Carter. They chose today to set him free from his sick little body. Im not so sure that I could be that strong. I admire his mama for the faith and the strength that she holds. I know that the next few weeks will be difficult for their family but I also know that they will make it through because they know what true love is. My deepest condolences are offered to them. My heart is sad for them. I will hold my Jonah oh so tight tonight for I do know how short life is.

My Head Hurts!

Ugh! I have a hospital hangover! You know the kind of headache you get when you haven't eaten right and have had no rest and have been spinning on emotions....yeah, a hospital hangover.

The Pulmo doc just called. Jonah's biopsy results looked good. His sputum is not growing substantial bacteria but this is all very good due to the fact he was hardly housing any mucus during the bronch... I have to admit it but I think all these meds are actually starting to do their job! I feel at ease. It's a great feeling!

Jonah will have to have his adnoids out. They are HUGE! I got some very neat pictures from the procedures. We are still waiting on his PH Probe results but I have a feeling that it will come back fine. I hardley saw the numbers on the box change. The highest I saw was 7.5

Update

Np Getting J ready for procedure

I am so happy to report that Jonah did great in the OR! All three procedures took less then 2 hours. During the bronch, the Dr said that he showed a little bit of red in the lungs indicating irritation but she said that he had nothing down there compared to his last bronch! This is to good to be true news.

We are staying in the RTU at PCMC. We have officially stayed on every floor of the hospital. It has been such a long day. Jonah has already pulled out his pH probe and broke the machine. he now is wearing restraints and I am hoping he will soon fall asleep.

Gearing up

Tomorrow J goes back up to the hospital for 3 procedures. I'm trying my hardest to stay positive! His last meal will happen around 10 tonight. Then he can have clear liquids up till 8am tomorrow morning. We have to be up at the hospital by 9:30am. and by 11 am he will be taken back to the OR. That is the saddest part! Watching someone wheel your baby away with you standing in the hall way trying to fight back tears.

If all goes accordingly he will only have to stay 24 hours. I will post more tomorrow. Please pray that Jonah will come off the vent with ease and that the doctors will find what they are looking for and have steady hands while working on him. Thanks tons! XOXOXO

SUMMER BREAK

Today was Morgans last day of her first year of preschool! It's bitter sweet I must say. It will be nice to have her home and make our own fun. I went to her class party (thanks Teressa) and watched her and her friend play and laugh and just have fun! We collected a few phone numbers as we hope to keep connected through the summer. I was so impressed with her preschool and all that she has learned this year. Morgan is growing up... I am so ready for summer! I have lots planned. First thing...We are off to St George for the weekend... A much needed escape! Hope everyone has a great weekend!

Today I have learned of yet another fellow blogger dying of Bronchiectasis. I would be lying if I said it didn't upset me. No I did not know this person, Though I have read her blog a few times and I had great hope for her...She had a double lung transplant, I always thought of a transplant as being home free, but I am hearing more and more stories of organ rejection, though I'm not sure if that's why she passed or if she died due to RSV. It's so sad.

Please don't let this stray you from being an ORGAN DONOR! It's so important!

I just got an email from Primary children's hospital, Jonah will be admitted on Tuesday for a couple procedures. This of course means he will be intubated and back on the respirator. Just typing that word I can here the loud noise that comes out of that machine. (yes I have some PTSS from round one!) I am a hot mess when ever I start to think about it. I wish it could all be avoided, but it can't. He needs to be Bronched and he needs to have some tissue biopsied from his esophagus. I have HUGE hopes that we Will have more answers by the end of next week. Oh and maybe he will be able to start drinking liquids again?!

WHY IS JONAH GOING BACK TO THE HOSPITAL SO SOON?
Well...He did not respond well to his last clean out that was done in April. Since then he has been sick a few times, and is has way to much mucus. The pulmo doc, (as am I) is hoping that she will find bacteria that the IV antibiotics did not kill, if this is the case then she can better treat him with a different IV antibiotic in the future. If she does not find anything, well then were up a creek with a sick Jonah. This is pretty much my worst fear. As long as we can maintain J's lung disease with these clean outs and daily medication, the hope is that we will stay on top and not allow his lungs to create more damage, if his lungs are just getting worse for no apparent reason then we have a huge problem with no answers in which case we will go back to Denver Children's hospital.

I am going to stay positive that all will go as planned and that the dr will find that dirty little bug that's making my boy so sick. I will keep you posted on all of it.

Grammy Lyn

I got the message this morning that indeed Grammy has passed away. Isaac was able to see her in time and for that I am grateful. She was 78 years old and lived a life that she could tell us stories about. She grew up in San Francisco and was very proud of that. I am grateful for all the stories she has shared with me, all the laughs to lift each others spirits, and all the cries we have shared over the phone. Funny how cying with another person makes things feel so much better. Now her body has passed away but memories of her are still very much alive.

His Grammy, My Friend

Tonight my heart is breaking into many pieces. Isaac's Grammy (who offten posts comments of inspiration here) has decided she has blessed us with her presence long enough, and she is now ready to be reunited with the love of her life. Tomorrow she will leave the hospital that she has been in for the past 48 hours to return to her home in northern California. Isaac will fly out tomorrow as the rest of his siblings and family will all make there way to her bed side to say good bye.

Oh how badly I want to go. This woman has been my rock through so much. She has been an amazing Grammy to me and an even better friend. She has given me hope and demanded that I stay strong through my obstacles. She has been MY number one cheer leader and instant comic releif. Honestly, I'm so afraid of her leaving me. She has been the only person who really truly gets what I go through with Jonah, and what Jonah has and still goes through, and now she is going, leaving this world for the next.

I think she knows I'm scared to lose her. I called her tonight to say good bye, a very painful way to tell some one you love so much good bye. After listening to her struggle for air with the by pap machine humming in the back ground, I blurted out how grateful I am for her being in my life and how much I love her. She told me she knew how much I loved her and I didn't need to tell her. She also told me to never forget how proud of me she is. She said that I am meant to be Jonah's mom and that he is something special.

I want to be there with this amazing woman, I want to hold her hand and give her tons of love. But with Jonah expected to be admitted on the 25Th of May for his own lung disfunction's, it's best for us to stay and just send Isaac.

Please keep her in your prayers, (Marilyn Crovo)

Top 10 Reasons I love Being a Mom

1. I have a good reason to blog- What on earth would I write about if it were not for these
shenanigans my kiddos pull?

2. endless amounts of hugs & kisses- Need I explain more? Priceless!

3. celebrating small successes- My most favorite thing about being a mom.

4. everything I do, they think it is amazing- by looking up to me I hope that I can be good example in all that I do.

5. buying shoes for little feet- it's a disease that I cannot cure...Little shoes are so cute!

6. Watching Isaac be a dad- I think watching your spouse becoming a father is like meeting your husband all over again... And I sure do love him, going through the struggles sure has made us strong parents.

7. Meeting other mommies-Thank you to all of the wonderful mom's that I have met... especially my fellow medical mommies!

8. Endless laughter, songs, and (clearing of the throat)talking- Oh my little Morgan, I'm so grateful for you.

9. Seeing Morgan helping/teaching Jonah-This alone brings tears to my eyes. What a beautiful thing.

10.Making the sacrifices to stay at home & being with my sweet sweet children-I am lucky, though this is financially a struggle, It's one I gladly take on. I LOVE being a stay at home mom!

A friend wanted to interview me for a project she is working on. It was kind of neat to take some time to answer her questions... I honestly surprised myself on how deep down I really feel about this...my life. Just thought I would share.


1. I have heard you coin yourself a "medical mommy". What does that mean for you and your family? What is a normal day like for you all?

Medical mommy is a term I dubbed to explain what I do for a living. Perhaps to be eknoledged for what I do, its more then just running to and from play dates. We don't have that life style. Im not your typical stay at home mom. I have no choice as to what I want to do in the day with the kiddos. Jonah's health always ranks number one! I do not have an in home nurse, I AM THE NURSE, THE PT, THE OT , THE SPEECH THERAPIST & THE FEEDING SPECIALIST! (not to forget my other "normal" mommy jobs) I do not get 15 min breaks for every 4 hours I work, I am with Jonah 24/7. I am the medical mommy!

2. Is it difficult to balance Jonahs needs with the rest of your family?

Balancing Jonahs need with the rest of the families will never happen. Everyone has to sacrifice when you have a special needs child. He will always come first. I know that sounds jaded, but its the cold hard truth. Do I feel guilty? Most definately, it eats me alive every day. The fact of it is that Jonah's life is more delacate, and so we must parent to that. My hope is that we (my husband and I) are doing the very best that we can do to help each child feel important, loved and listened too. Even if this has to happen over the phone, while I am at Jonah's bed side in the hospital.



3. In one of your blog posts you wrote "I believe it will get better". Is that your motto or is their something else that moves you?

I do believe it will get better, Jonah's illness may not change, but I will adapt, I will learn how to be better at what I do, how to care for him, and how to become fully excepting of these circumstances. In time it will all get better.

4. What would a perfect day be like for you?

I offten dream of what the perfect day would be. Funny, if you would have asked me this a few years ago (pre Jonah) I would have had answers that were full of worldly things, dropping my daughter off at daycare so I could go shopping, shopping, more shopping, having the husband pick her up and then have a beautiful dinner in some fancy resturaunt... But now, a perfect day would be a day much more simplified. A day where I didn't wake up and frantically run into Jonah's room to make sure he was still alive, to make sure I didn't sleep over his sat moniter, a perfect day would be being able to spend the day at the park and not have children point or run away from my son because of his oxygen and walker. A day where we as a family could enjoy the day to ourselves with out the interuption of therapists or doctors, we could just be us, a family, a family with a special needs child.

5. Have you had to take classes or anything else is order to better care for Jonah?

I haven't had to take a class, rather some medical training to help prepare me for some of Jonah's medical needs. ie: learning how to place a feeding tube for when he pulls it out (they always pull them out!), how to place an NG tube, how to properly care for his feeding tube placement, I was trained on how to deep suction (threading a tube down his nose to the lungs and suck out mucus. On my own I have taken a few CPR classes, and I read read read like a mad woman on lots of medical web sites.


6. What message would you like to share with other parents? Or people in general?


My message to others would be: No matter what life throws your way, laugh, don't lose your sence of humor, nothing is possible when you see the world in a negative light. As hard as this may be some days for myself, it's what keeps me going. laughter is medicine for the soul!

Sick Sick & Sick!

Morgan had stomach flu Sunday to Monday. Poor thing! She is such a trooper when she is sick. No tears, just lot and lots of snuggles. I'm so glad she is feeling better, and her Happy self is back in the game.

Mr Jonah is still sitting on the sidelines. Yesterday he was breathing in a weird pattern and coughing tons. I suctioned him a lot and was pulling out very small but hard secretions. I called his pulmo Dr and we upped one of his meds.

This morning I went him to wake him and he was struggling to get air. I sat him up, gave him treatments then suctioned him. I could not believe my eyes! Jonah had filled at least a 1/4 of a cup with mucus! He went blue... I'm talking blue(okay, more gray)every time I threaded the tube down him. Then each time he inhaled he would go into a coughing fit. I was in over my head, so I brought him into the family doctors office. I'm so glad I did. When we got there they hooked him up to get his oxygen sats and he was bouncing between 86 & 88. He was already on a high amount of O's but we bumped him up higher. We were there for an hour and in that time he was given another treatment and the pulmonologist was called.

The Pulmo and the family doc decided to try J on some different meds, one of them being a high dose of Dexamethason for the next 4 days. Jonah will go in and see the pulmonologist tomorrow afternoon, I'll keep you posted on that.

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may day, may day!

Today is just one of those days that I want to complain...I'm very good at complaining... Ask my husband...Oh wait you can't he is in California!

Oh, how much I miss him!

I have learned many lessons in the past 72 hours that he has been gone. The first being, I would never survive as a single mother. Props to my mom, and all the other single parents out there! I am amazed by you! I'm embarrassed to admit it, but I thought I was Miss independent! It only took 20 min after Isaac's plane took off to prove that theory wrong.(while dragging in 3 garbage cans) Indeed I am very dependent on my husband. He does SO much for me and the kids. Thank you Isaac! XOXO


I have figured out away for me to control my potty mouth while driving!

Clever huh??

What I have not figured out is why my 4 year old is so set on flooding our toilet any chance she gets(I have cleaned up a total of 5 overflows), why our dog likes to roll around in her own doody (this is a new hobby), why Jonah feels the need to pull my hair and scratch my face when I'm just trying to comfort him, why I had agreed to dog sit a "run away" doggy, who by the way, won't stop barking, and why I cant pull it together to clean the house! I am having a "Terrible, horrible, no good very bad day" week...wait it's still only been 72 hours!


Because I am an optimist, I will keep in mind that I do only have 22 hours of being a single mother left! And when my husband gets home I will tell him how wonderful, how special, how helpful he is.

Dr. Laura will be proud!