Sweet Evelyn

I finally got to meet my new niece Evelyn Rhea Heap today. She is so precious!!! I am so excited to get another girl in our family!!!!

GingerBread Houses, Eating and a Baby

I have been trying to get an update on the blog for about a week now. It seems like it was one of the craziest weeks I have had in a long time and it just never happened. So now I am doing a extra long update to catch you up.

Last saturday (Dec. 12) Scott and the kids made a Ginger Bread house. They did one last year and really loved it, so we did one again this year.

Josh is the one with the most news to update (what else is new?)... so here we go.

The pictures below was taken a few days ago of Josh using a spoon and eating!!! This is huge news....he has not been able to figure out the motor planning to use utensils. It's been bitter/sweet in the eating area right now. He has regressed quite a bit and has perplexed both the Therapist and I. He is not attempting any chewing right now and is requesting pureed food when he will eat. He has been on thin liquids for awhile now in a soft spout sippy cup and done fine. But he doesn't really suck on it, more just chews it a little and gets some out. Recently he has been very interested in Capri Suns, Juice Boxes, ect. Well he is not managing the thin liquids that way since pretty much every time they come back out his nose. I am not sure why he is having such a hard time, but he is. So for now he can still have gatorade in his sippy cup, but if he wants a drink with a straw we are going to have to go back to nectors again. Sigh... it's always something with him.

Now onto other news. Josh had his MRI this past thursday. Can I just say I am soooo glad this is not something we do on a regular basis?? It is not fun. The end. He had to get poked in both hands for his IV and he was not happy about that. Duh. Then he had a new anesthetic that he has never had before and did not react as well. He did get some Zofran in his IV before he even woke up and at least we didn't have any puking or heaving this time. He did however have some nasty side effects and BAD balance issues. He was very out of sorts (for lack of a better term) and it lasted the full 24 hours they said it could. I am just sooo glad to have that over with. It is hard and stressful and not fun. I will post when we get results.

Josh also had his yearly testing to see where he is at developmentally. When school gets back in session I will get those results and post them as well.

Now for some happy news!!! My sister, Chantel had her baby at 2:23 this morning!!! Evelyn Rhea Heap was 7 lb 3 oz and 19 in long. I have not seen her (hospital rules) but I will post some pictures of her when I get some. I am sooo excited to have a new niece. Congrats to Chantel and Brian!

Today is MY christmas day!

Today was a great day! For numerous reasons in fact, for me, it was as good as Christmas.

Josh got his new Feeding Pump today!!! I know most of you won't understand why this is so exciting, so you'll just have to trust me on this. I thought I would take some before/after pictures of this grand event so you might be able to understand.

This is the old and new pump. Look how much smaller the new one is!!!

And this is the new super mini backpack that we ordered. Look how much smaller it is from the one he has been using.

And just a comparison of the Feeding Bags. The new pump has a different design, but holds the same amount of formula. Who woulda thunk it?

This is Josh wearing his old backpack.

And the new backpack! He is doing to be sooo happy!

And here is the new set-up in his room. I am hoping this means a beep-free night!!

Now onto the other reason today is MY Christmas. We had a visitor this morning at our house from the 'North Pole'. It's not anyone we know. He gave us a note that said Mrs. Claus wanted to help us out this Christmas season. The 'helper' went out to his van and proceeded to bring bag after bag of presents in our house. Scott and I were shocked. We don't know who did this but we are so overwhelmed with gratitude. We don't know why someone picked our family since there are so many others out there who need it too. But we are very overwhelmed with gratitude that someone thought of us.

Under our tree is now CRAMMED with presents. We still are in shock and can't believe it. The kids are so excited they can hardly wait to open them on Christmas.


Happy Holidays from a very overwhelmed and thankful Christensen Family!

What we do......

I haven't posted in a bit, so I thought I would do a fast update on our crazy household.

Scott is doing great, working and doing cub scout stuff. He is hoping to have a promotion at work here soon and maybe, just maybe, can get a day shift. I hope so anyway!

I am doing great too. Just keeping up with the homework, dr appts, therapy and everything in between. Scott working at night has taken a bit of a toll on me since I am left to do most of the time consuming stuff with the kids, but it'll be OK. I am looking forward to the last two weeks of December when we have a break from Dr. appts and therapy.

Trevor is doing pretty good. He his having some behavior challenges at school, but academically he is doing well. He has been having a bit of a rough time lately and been more angry than usual. I am still not sure what has triggered it, but I hope whatever it is will work through soon. He is already on medication for this, and I DO NOT want to add any more. He is looking forward to Christmas.

Jordan is doing great! He is still his energetic, talkative, and curious self. He is doing amazing at school and learning to blend sounds together to make words. He amazes me with all he knows. He has several 'girlfriends' still, but does have a couple boys he talks about now too. He is also looking forward to Christmas.

Here is a couple pictures from our photo shoot last month. I love these pictures because you can see their personalities as they were having fun.

And finally.... Josh. What to say about him?? He is doing pretty good right now. I took him in for a recheck on his ears yesterday and he has one ear still infected. So he is going on a much stronger round of antibiotics now. He has gained one of the two pounds he lost while he was sick with the H1N1 and RSV. He is doing amazing with the fact that he is hooked up to his feeding pump 24/7. He is such a trooper... I can't say that enough! He does have some sensory issues going on right now and I am working with his Occupational Therapist to hopefully help get things under control. He is feeling better all around with his daily calories in him, so he has so much more energy. He has started saying 'cool' and says it all the time. It is sooo cute! He has so many signs it's hard to keep track of how many. I would guess he knows about 25 or so.

Here are pictures of him playing peek-a-boo during our photo shoot. It was so cute!

So that is how we are doing. I am still waiting for Josh's EEG results from his sleep study. He is also being schedules for an MRI. I am hoping to wait until after Christmas, but we'll see. I hope everyone is doing well and enjoying this holiday season!

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!!!!

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 night.......at least 1 1/2 hours right now)

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!

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.

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.

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!