thickened liquids

I hate (yes I know hate is a strong word) thickening all liquids for Mr. Jonah. It has become such a pain! It has made keeping him hydrated so much more difficult! Jonah doesn't like juice, he will only drink Milk, almond milk or water. Occasionally he will sneak a sip of my Pepsi...not condoned by the way! He does not mind the thickened milk but won't drink the thickened water, and I don't blame him. It's been so hot that he has been rejecting any thickened liquid I give him and I get it, I mean who wants that thick of anything when temps are as high as 98 degrees? I guess I need to go back to giving him daily boluses of his formula and lot's of water. It's getting more and more difficult to use his feeding tube as he is well awear that it's there attached to his belly. He does all that he can to make sure it's going to be a difficult task for me. Ahh, my boy! He is my wild child...who woulda thought?

home from our mini va-ca

Our family vacation to S. Lake Tahoe was absolutely wonderful. It was the perfect amount of time to be gone from our normal chaotic lives here in Salt Lake. We got to smell fresh air for 3 beautiful days. Though Jonah did have a ruff spout. I'm glad we brought him home when we did because the last day was taking it's toll on him. Every night we were there, Jonah co-slept with me and my husband in a huge California King. I had him close to me the entire night so he wouldn't roll off. The first night I could feel his heart pounding fast. I wasn't sure how fast it should be beating but I knew it was going fast. Eventually it slowed to a normal rate and I was at ease but then it happened the next two nights. Because we flew I didn't bring his Oxcimiter. (I won't make that mistake again!) Since we have been home here in Utah I have spot checked J through the night and his heart rate is reading normal. How weird. His Sat's are hanging around 89 with no O's. We have him hooked back up to his plastic "leash" and letting the O's flow.

SAHM horror story

Some days I think that being a stay at home mom will be the end of me.

UGH! I was on the phone getting stuff figured out with the Social Security department because Jonah was dropped from his insurance due to the fact I worked in the months of June and July (long story) so while I am chatting it up with the disability peeps my children are dumping every toy, book, shoe, and bath item into the pack and play I left up from our company!!!!!!!

Yes, I should have taken a picture, but that would have meant that I would have been calm about this and I was as far from calm as I could get! I could have kicked their bums to Tahoe! (it would make for a quiet plane ride) But because I was so furious I saw it best to send Jonah into his room and Morgan into mine while I yelled very loudly to them both while I put each book in it's place each toy in it's place and folded every towel we own and put them back on the shelf in the closet.

My mom just called. When I told her what they did she laughed, I'm still not finding the humor in it. I am stressed enough as it is making sure I have packed up all of Jonah's stuff, and making our flight that we have already missed once today, oh my, I think I will pack extra clothes for both children and let them live with their grandma!

New happenings

Jonah has been so much fun these last few days. We have had a refreshing and much needed brake from the norm. He is feeling so good this week and it shows! Jonah has been signing so much and making lots of new sounds. My favorite would be his clicking my least would be the gaging noises he makes just to get a laugh from Morgan. He is quite the comedian and entertainer. I love seeing him interact with the kiddos in his early intervention structure play group. He is constantly blowing the kids kisses. I'm glad he makes all of us feel special.

While waiting for Jonah's thickening agent to ship out, I started using Pectin to thicken his drinks. I think I prefer it over Simply thick... so does are bank account! I mix it into 2 different water bottles, one containing Milk and the Pectin, the other filled with water and Pectin to drink while on the go and to keep hydrated. He is still receiving 18 Oz via his feeding tube daily but I'm really trying to push him to eat additional calories and drink more liquids.

My sis in law and I were going through some pics of Jonah last night and she pointed out how great Jonah looks. It's good to hear it. I mean I do think he looks great I guess It's just sometimes hard for me to see. Something about hearing it from others who see him only as Jonah, not a patient, not a sick child but see him as just a little boy, well, it makes me feel good cause it's hard for me to when I know all his struggles.

Tomorrow our Florida family goes home and while it was so great to have them here, we are excited to leave on our trip to Tahoe. I'm ready to hang out by the pool and have a date night with my hubby while Grandma & Grampa visit with their most favorite grand kids (okay, so they never called them their favorite) The kids will have a blast, we got them both new swim suits and matching towels. It will be fun and a nice change of scenery for us.

Oh my my

I can't stop laughing! Of course it's my "I'm so embarresed I could die" laugh. Yes friends, Im mortified. J's Doc read my blog, and of all posts to read she read one of me venting and having a pitty party table for one! Dr P We love you XOXOXO, You too Courtney!

In other less embarrassing news, My brother, his wife and their two beautiful kiddos are here visiting us from sunny Florida. It's so fun to have the cousins playing together. Jonah is enjoying having another boy around but to day he is enjoying the fact that he can leur his auntie Amy into the kitchen with kisses then quickly shut the kissing factory off in trade for a handfull of cheetos! Im sure I will have more stories as they are setting up camp at our house for the rest of the week. Oh I love having family come out here to visit!

FEES study is done...for now

I'm not gonna lie, I thought the FEES study would go in my favor, as like most of the docs have pointed out "his swallow studies all look great!" I had hope that we would go in and like the swallow studies done in the past there would be no evidence of anything happening.

The entire appointment lasted 2 hours. That's a long time for a FEES! What the ENT found was that Jonah is still needing to be on thickened liquids due to the fact that he is not clearing the liquid as he swallows and this is letting liquid go down the other tube into is vocal chords causing him to choke/cough.

And so it goes, this is Jonah, mind you. Jonah needs to be seen again in 3 months for another swallow study and needs to start back up in feeding therapy. It was mentioned that Jonah might drink best from a sippy cup that has a straw. (if you use this kind of cup let me know what is best. Melissa could you send me that link for the cup J uses??) This will prevent Jonah from tipping his head back. The goal is to reteach him to drink (people we have taught and re-taught this too many times) He now needs to keep his chin to his chest and sip through the straw thickened liquid. I hope that every doc understands that this is delaying Jonah from getting off his feeding tube, but I know we have to do what we have to do, still sucks it all has to be done in itty bitty baby steps.

Finally!

Tomorrow Jonah will be back up at PCMC for his over due FEES study. So over due that yes I have been letting him have liquids...oops! I'm hoping that all will be fine and we can move on from using thickening agents and use the tube less.

Sassy, Sassy Little Miss. Mo

Morgan is sitting on my bed next to me, as I am laying on my bed, blog stocking, she picks up the brush and starts brushing my hair to "help me look like a princess" I must add that it feels wonderful, it's like scalp therapy. Isaac comes in the room and mentions that my hair is getting long and I made the comment that yes it was getting long and I needed to cut it. My sweet little Morgan is twisting and pulling my hair as tight as she can then tells me that she needs me to get the scissors, "you are not cutting my hair!" I said to her, she then replies "well what? you are the one who said you needed your hair cut!"

Jonah and his adenoids

So we were asked to be here no later then 10:45am for check in only to sit in the pre-op for THREE hours! I was irritated but I have been here enough to expect that there might be emergencies that take firsts over J. The Dr. came out after he was finished and said that Jonah's tonsils looked great and were small, so he didn't bother messing with them. His adenoids however were big and were removed. This s somewhat good news, this means easy peasy recovery!

We are now in J's room or his dungeon! This room has no windows. he is very onrey and unpleasant. This usually occurs after he has been sedated. He wakes up for a few moments only to scream and cry, and scratch my face a few times, then he fall back to sleep. kind of funny. He is sating poorly at the moment. he is on 1.5 Lt of oxygen and they won't let us go home until he is at base line, which I semi fudged and said was .5 Lt, I am having constant pep talks with him to remind him of the parade he will have to miss if he doesn't start breathing,lol. The Dr said we could go tonight if he is doing better. Cross your fingers!

Chocolate???

I wish life were less like a box of chocolates.

I got a routine call this afternoon, that ended up being not so routine~ The woman who worked at the hospital was calling to ask questions about Jonah (wondering what meds he was on, if he has allergic to anything) Then she gave me the time I was to have J checked into the surg room, then, she asked me about some strange disease they would also be testing Jonah for. I had no idea what she was saying, I wasn't familiar with the disease. She asked me to hold to make sure she had the right paper work. When she got back on the line I asked her for the spelling, and kind of shocked I hung up the phone and called our nurse and doctor.

Neither had ever heard of it, but while I was chatting with the nurse the Dr looked it up, I was also googling it (big surprise) He read off some symptoms and I read some symptoms. It was kind of scary. It is called Mucopolysaccharidosis. A more common name for this uncommon disease is Hunter Syndrome. I have been reading about it and I feel 99% sure this is not something Jonah has, but that other 1% is leaving me restless and making me have huge anxiety. Why would they suspect Jonah of this disease? Is it his stunted growth? His learning delays? I just was not expecting the receptionist to lay this on me.

So tomorrow is the big day. The day that once again Mr. J will have to be intubated yet again. hmmm, I think I know why he has air way issues ;) I am hoping and praying with all my heart that this will be a beneficial surgery. If it's not I just don't know what else to do. I am putting full trust in these doctor's that they will help my boy.

Jonah is coughing again. It is my fear that his lungs are failing every time I hear this cough. Most likely this isn't so, but it is still scary to me. I have read a lot about lung disease, CF, lung cancer and non CF Bronchiectasis. Yes, I agree, it is very unhealthy to know too much, especially when the Internet is so good about posting the most extreme cases. Oh my, this is just what happens when you have a chronically ill child. You become super paranoid, over barring and crazy!

I'm lucky to have friends who put up with me! XOXO