Thursday, November 26, 2009

Being Thankful

Today is a day to be thankful. I am very thankful for many, many things and blessings I have. Sometimes you just need to sit down and think about it to realize how blessed you truly are.

I am thankful for the church. I am so grateful I know my family will be together forever. I am thankful for the atonement and that I will not be given more than I can handle. Some days I seriously question this, but in the end I do know from how blessed I am, that things all work out.

I am thankful for my wonderful husband. He seems to keep me grounded. When I become overwhelmed with everything that consumes my day with the kids, he makes me laugh. He keeps things funny and never fails to make me smile. He is a great support to me. I am thankful he works hard for our family. I know this past year has been hard on him, but he has dealt with it amazing!

I love and am so thankful to have three wonderful boys. I love them so much and they each bring me so much joy in different ways. I do wish I could make life easier for Trevor and Josh, but I know they are blessed. I learn from them as much as they learn from me and I am so thankful Heavenly Father felt I was good enough to send these special spirits to me.

I am so grateful for family and friends. This past year has been one of the most difficult I have ever faced. I could not have made it through without family and friends. I want everyone to know how much I love them and appreciate all that they have done for me. I probably don't thank them near enough, but nothing they do goes unnoticed. I am grateful for the wonderful friends I have met on blogger and facebook. I have truly got the most amazing people that keep positive comments coming my way and let me know I am doing a great job. Thank you!

And last, I am thankful for all the people involved in Josh's life. He has some amazing therapists and doctors! They care about him personally and do everything they can to help him have the best quality of life. It is truly a blessing to have this in our life. Josh requires a lot of support to keep on going and I am so glad I don't have to wonder if they have his best interest in mind.

I am thankful for medicines, feeding tubes, braces, ect that have helped Josh get to where he is today. I never thought I would actually say that I am thankful for these things that cause such headaches in my life, but I am. Without it, life would be drastically different.

I hope everyone gets to spend time with family and friends on this thanksgiving and reflect on what blessings you have in your life.

Happy Thanksgiving!!!!

Tuesday, November 24, 2009

I am tired. The end.

Tonight as I sat at my computer putting off my nightly routine, I did some thinking. First of all I was thinking that maybe some 'medical' mom's might have some advice. And second... I just wanted to actually document everything I do at night.... so you can see why I want to rebel some days. The advice I am wondering about it maybe how to speed up the process... so any of you mom's that do this as well.. send along any ideas.

Keep in mind this is JUST for Josh. Not what I do for the other boys.

First of all... you can usually find a sink of bottles soaking every night.

Next... this is just my corner that used to have lot's of G-tube supplies in it. It is now completely dedicated to feeding and medications only. When we had to do all that re-arranging to start the night feedings, I put all G-tube supplies in his room. Now we are over-run with a pharmacy of meds.
This is Josh's morning meds. I get them all ready the night before. The only difference between these and his night meds (that I get ready in the afternoon's usually) is that in place of the green syringes there is white ones. The small, skinny syringe is a med I give 4 times a day.

Here is the bottles I get ready every night before bed. Josh's formula only lasts 4 hours at a time so I have to get up at night to add more formula to his bag. I make the formula ahead of time since I am so tired at night. Makes it easier.

My trusty timers. I set the timer so I can add formula before the bag empties out and the beeping wakes up Josh. Also it just reminds me when I added formula last. The smaller timer I finally bought so I could keep it with me easier since we do leave the house. LOL.

I know this is blurry, but this is my cell phone that has two alarms set on it. One goes off at noon and one at 4pm everyday to remind me to give Josh the med he has to take 4 times a day.

This is what I set out every night for Josh. His clothes he will wear the next day, the dressing change stuff, creams for his G-tube site, his backpack he wears every day, a new feeding bag, and LOTS of tape to keep things in place.

And here is Josh sleeping peacefully. This pump and me do NOT get along lately. As you can see in the picture the baby monitor is right ON TOP OF the dang pump so I can hear it and get to it before it wakes up Josh in the middle of the night. Sometimes I succeed... mostly not. But I am working on it.
Now... keep in mind I do all this stuff every. single. night. And you know what? It still takes about 20-30 min to just get him out of bed, medicated, hooked up to his pump/backpack. That is why I do all that the night before. I have no idea how to make it go faster. And some days I just want to rebel and not do all of this every. single. night. But alas.... this is how it will be until at least February. Wish me luck in surviving.
(Now don't even get me started on how long it takes to get Josh bathed, dressed, drugged, ect at least 1 1/2 hours right now)

Sunday, November 22, 2009

Playing, Feeding and Sick

I have been meaning to get an update on here, but once again... ran out of time!

First, I took these pictures a couple nights ago. Trevor was on the computer looking at something, and Josh crawled up on the chair with him and was so excited to be a 'big boy'.

Josh's 24 hr feedings are going marvelously. I am serious, he is such a champ! He has not even once tried to take off the backpack, or complained when we put it on him a million times a day. What a sweet boy. I am in awe at how well he has done. Part of it may also be the fact that he feels much better and is not vomiting anymore. So that brings me to the changes we made and how well it has gone. We have added two more/different meds for his reflux. One is Prevacid, but instead of once a day, we have to do it morning and night now. We added Zantac twice a day. Also he went off the Reglan and is on EryPed 4 times a day now. Between that and not doing bolus (large amounts) of feeds anymore, he has stopped vomiting all together. Great news!!! So for now we can avoid the surgery. His GI doctor is so pleased it has worked and for now told me to keep this exact routine going until his next feeding clinic appt, which will be in February. So it looks like we are on the feeding pump night and day for at least the next 3 months. But I am so happy to see how well he is doing and how happy he is.... so it makes it all worth it! The only problems we have encountered have to do with his feeding pump. We have a new pump on order with something called a 'super mini backpack'. For now we have been rigging different backpacks. It's a pain, but we should have his new setup in a week or so.
Now onto the not so great news. Josh is sick again. I took him into the doctor yesterday and he has a double ear infection and his lungs were starting to sound a little wheezy. So back onto the albuteral we go and we will be watching him close. I have tried sooooo hard to keep him safe from germs, but am not having a good track record. He may just have a lapse from his H1N1/RSV and a secondary infection. But I don't know. Can't really tell. He is not sleeping well... and just in general not himself. But we are on some antibiotics and he should be feeling much better tomorrow.
Other than that... life is crazy normal here. I am looking forward to this holiday week since it means no doctor appts and therapy for Josh. Much slower pace. I just need to get my Christmas shopping started and then I can relax even more!

Monday, November 16, 2009

Sad Pictures

Since I have had several inquiries into how the sleep study went, I thought I would post some pictures.

I took pictures so I could show Trevor and Jordan. They usually ask what is going on when I am always taking Josh to the hospital. So I took pictures to show them. Jordan said it didn't look fun. Josh would agree. LOL!

This first picture is in our room before he was hooked up to anything.

This is just the EEG so far... he was mad and hadn't even got the rest of the monitors on. Poor kid!

Now he has everything on. He was the most ticked off about the nasal cannula to monitor his breathing.

And now he is peacefully sleeping. He did very well.

I am so glad this is done and over with. I won't get the results from his Doctor for a couple weeks. It went well and I hope they get what they need. I'll post when I know more.

Wednesday, November 11, 2009

The Josh Roller Coaster

Isn't this picture so sweet? I think so! What a miracle he is.

I have decided to call part of my life the "Josh Roller Coaster". It seems like there is never anything smooth sailing with him, it's all up and down.... and then sometimes even upside down.

The last couple days have been very emotionally draining for me. Monday was a chaotic day in which I did not do well at planning out my day. Josh had both his Speech Therapist (Jill) and his Occupational Therapist (Lynda) come. He had a very off day. He has those once in a while, but this was a particularly bad one. Because of that, it instigated a couple deep conversations about Josh and where we are currently.

His Speech Therapist, Jill, is starting to think that Josh's auditory processing is very far behind. We already know that he has a Sensory Processing Disorder, but his auditory is farther behind than the rest. It really explains why he is not really even babbling, let alone talking. He is scared of every noise he hears too. This also explains why when we verbally say something to him without signing, he doesn't 'get' it. This doesn't change anything as far as therapy is concerned, but Jill is going to do some basic hearing tests on him to make sure there isn't fluid in his ears again.

His OT, Lynda, was able to witness something that nobody else besides Scott and I have seen. Josh has these bad shaking/twitching spells going on. They started last december, so it's almost a year later. He is very inconsistent with them so we have not been able to have his neurologist see them, or anyone else. She was concerned and told me she wishes she could figure it out. She also thinks we need to address it again since it has been almost a year and no change. As far as therapy is concerned Josh is doing good with feeding. He is starting to chew more and we are so happy. It still does not address most of his problems, but any progress is good.

Then, I finally had a good talk with his GI doctor about his reflux mostly, and feeding/nutrition concerns. She expressed to me that with Josh's track record of problems she is a little worried about doing the Nissan Procedure (that is where they take the top part of the stomach, wrap it around the esophagus to prevent anything from coming up) since his stomach position is high and he over-reacts and takes much longer than usual to recuperate. So we are going to be as aggressive as possible first with treating the reflux before we go forth with the Nissan. I trust her judgement and know that she is truly thinking of Josh personally, and not just another medical case. So we are going to change one med, add two more and put Josh on continuous feeds. Right now he is on continuous feeds at night, but not during the day. We are going to put him on 24hr feeds for a while and see if his body can tolerate it better and he can gain his weight back he lost and keep gaining to the ideal weight. I have been opposed to the 24hr feeds at first, but after talking to her I can see the benefit with it and I am willing to try it.

Now tonight is Josh's sleep study/EEG down at Primary Children's. I hope that we might find something there that can explain some of his complex issues, but we may not. I just hope we can get to the bottom of everything soon. I'll post more tomorrow when I have more information.

Friday, November 6, 2009

Pictures of the kids!!!!!

A friend of mine contacted me awhile ago about taking pictures of my kids. I have wanted to get pictures done for a long time. So I took her up on her offer and even though it took a few weeks to finally get them done, we did it before Halloween. Thanks Shanda so much! I am so in love with these pictures!!! She did an absolutely amazing job. I had a hard time narrowing it down to post on here. But here are some highlights. I will post more in the coming days. Enjoy. (I sure did!!)

Thanks again Shanda!! I am so happy to have these!

Thursday, November 5, 2009

The way we roll.......

This is our night. Usually we don't have two kids going at the same time, but since Daddy was home tonight... score!! I had help!

This is Josh fighting the breathing treatment. He is not a fan.

Look how sad he looks!!! About breaks your heart. At least he is getting better, however slow that may be.

Tuesday, November 3, 2009

Is the end in sight?

I was going to post an update yesterday and never found the time to get to it. So I finally have some time right now before Trevor gets home from school. Thank goodness!

Trevor is doing much better! He just has lingering asthma problems, but that is all! He saw his doctor again yesterday and we got a new prescription for an inhaler and he took it to school. He will be on preventative breathing treatments for the next several weeks, possibly until March. He was so happy to get back to school and I talked to his teacher an hour ago and he had a good day as well. Can't ask for anything more, huh?

Jordan is also better. He was so excited to go back to school today. This morning he told me he 'missed his girlfriends'. He is such a ladies man! He had a good day and was so happy to see he gets to go on a field trip this week.

Josh is slowly improving. I am not seeing any great improvement from him, but he is not getting worse. I took him to the doctor yesterday as well. We are going to be doing some breathing treatments to help him get rid of the gunk in his lungs/chest for the next week, and then he will also start a preventative breathing treatment plan. He also will be doing it all winter. His doctor is concerned if we don't keep an aggressive plan going, he could end up really sick. His lungs need a chance to heal. We decided yesterday to try one more day without any oral steroids. He had a very bad night in which I was concerned enough that I called back first thing this morning and when the doctor returned my call said he definitely needed to go ahead with the meds. I am just so tired of meds!!!!! But this one is only for 5 days. In other news, Josh has lost almost 2 pounds. We expect weight loss when kids are sick, but it makes me so nervous with Josh. So I am going to up his feeds a little and take him back in two weeks (if not before, LOL) to make sure he is starting to gain it back. I tell you this kid keeps us on our toes!!!

I am feeling much better, just a lingering cough and runny nose. Thank goodness I am on the tail end of this since Josh is not sleeping well and been stressing me a bit.

Thank you everyone for thinking of us! It is so nice to have so many people who care!! I want my mom and dad to know I appreciate all they did for us as well.. bringing me food, meds, whatever we needed. Thanks!!!!

Sunday, November 1, 2009

Some fun for the kids

Since the kids didn't get to go trick-or-treating, or do anything for Halloween yesterday, I was going to come up with some fun craft or something. I didn't plan on feeling as bad as I did... so therefore they did not get to do anything. Poor kids!

So today my friend Lorina called to see how our family was doing. She decided to throw together a craft for them to do since they missed out on everything. They have been elated to say the least to have something fun to do. They made a silhouette picture, sucker ghost's and played with play dough. Here are some pictures of them having some fun!

And if you can't tell from Jordan's funny face he was pulling for a picture, they are doing much better.

Now if Josh and I could just get on the upswing... life would be grand! Josh is not having a good day today and is miserable. I hope he turns the corner soon. I don't think I will breathe a sigh of relief until he is all better.