It looks like we are back in the hospital for the night! Keian has been getting a cold again. For those of you don't know this means a lot of coughing and a possibly reflux and possible aspiration. Thats what happened today. He has been wheezing and since it happened so hopefully no pnemonia. We have been very lucky so far! I did convince his doctor that we needed to go home with a suction machine this time to try and prevent this from happening. Finally the doctor agreed! So I am off for a stay at the hospital tonight and hopefully be out tomorrow morning!

I am exahsted! The never ending doctor appointments and the never ending needs of Keian are wearing me down. I just feel a little discouraged that there really isn't any help around with family. Sure I have my brother and two sisters here but they have lives of their own and families to take care of too. I have decided to look into respite care for Keian. Once he is approved for Social Security it should be paid for. I have an appointment about it in two weeks. I'm hoping until then maybe DSHS can help with it. I don't know though.
Last night was kind of bad and the fact that I am trying to keep a cold at bay is not helping. Keian last night started refluxing again. When he does this he starts choking on his spit and turning blue. He has to be watched like a hawk when this happens. I know his meds need to be adjusted. I talked to the pharmicist and she gave me a few suggested to talk to his doctor about.
I am down but I am thankful for my best friends the Waywells. They have been a true blessing through all of this. I can call them at a moments notice and they are there for me like family. I am also thankful for my children. Their smiles are what keeps me going. I love hearing Jessica come up to me and say,"Mom, I love you!" I love seeing Kyle so concerned about his brother's welfare. He has such a sweet heart about him. I love seeing Keian laugh and trying so hard to talk. The best things in the world are seeing your children grow up. I can't believe that they are all that I will be able have here on this earth. If my body could have taken it I would have had six more. I am thankful for my religion and knowing that know what happens with Keian, he is in the Lord's hands. I am thankful for a ward that steps in and helps out no matter what is asked of them. They are truely a blessing when it comes to this family. We would have never survived without the loving support, meals and advice given by our leaders. I am thankful for our home teacher that is so devoted to us that he will make it every month even if it is on the last day. I am thankful for our Preisthood leaders who have helped my husband cope with the stress of everything. I am thankful for the men who have come to give my son or me a blessing. I am thankful for the missionaries who come to our home and bring in the joy and spirt of the Lord. I am thankful they drag my husband out with them to teach the gospel to those that really need it in their live. I love seeing their hopefulness of life and newness of adulthood to make their own decisions. I love to see them growing spiritually and being an example to me to read and study the scriptures.
I am thankful for the mothers in out ward who step up and help out with Jessica when I just need a small break. I am thankful for the friends that I can call at a moments notice and say I need help!
Ok now I feel a lot better and not so discouraged with everything.

Today has been rough! Man I could sometimes spend two whole days on the phone making appointments and coordinating appointments for Keian. We have been back and fourth between the doctors trying to convince the schedualers that I can't drive up to Seattle 3 times in a week or even stay there for a week. On top of all that his primary care physician decided to change doctors for his kidney to one in Seattle. Now I get to squeeze in another consult to an already busy day on August 7th. It looks like he may end up doing his EEG and the test for his kidney that day also.
Keian has been so vocal the last couple days. He is using a lot of AHHHs lately. He doesn't differetiate between many consanents. He has done G and D so far. Hopefully I am just being a worried mother and he doesn't have problems with hearing.
His little braces are halping quite a bit with his hands. I have noticed lately Keian does not use his thumbs much. It is suprising to me how inventive he is with his hands to get his pacifier back in his mouth.
Today was also a day to sart feeding rice cereal and not through a bottle. Keian has had it before but never from a spoon. I don't think he ever really tasted it. He seemed to like it since it was mixed with Bananas. He didn't eat much of it but that's ok. I just want him to get use to puting food in his mouth since he doesn't take from a bottle well at all. Maybe I can transition him to solids easily and give him liquids through his NG tube. I do need to get him over the sucking air thing though. Eventually he will need fluids taken by mouth is I am ever to get rid of the NG tube. Maybe a sippy cup will help but he's no where near coordinated yet.
I heard from Social Security today. The lady said that they wanted more info on the doctors and stuff that has happened in the last four months. She said that they were leaning towards denying him but with more information we should be able to get things approved. This could be a huge step for us! It may allow for us to go back to Utah to be near Lee's family. If he is approved we then can get medicare for him on top of any other insurance. This would then pay for any extra things that we could not afford if we were to move to Utah.
Things seem to be looking up. I'm glad we have the Lord in our lives. He has been a comfort through all of this.

Keian said his first word!!!! Ok it was a couple days ago but I've had a lot to do and so on. He repeated me when I said DADA. Do he's said something. His speach is a little delayed although now we know he is actually hearing some things.
Today was our first day at church together in a long long time. The entire family made it! We were of course late as I didn't take into account and exploding diaper happening but the point is we made it to church together. It was nice to see so many people there that wanted to know how the family and especially how Keian has been doing.
Relief Society was about listening to uplifting music and the Hymns. I have to say that the one Hymn that gets me though all of this is Oh my Father. Its comforting to know that God is there and all of this is in his hands. That no matter what happens Keian will be taken care of and is loved just as much by our Heavenly Father as he is by me and Lee.

The rest of yesterday was so long!!!! We saw our physical therapist and got a new wedge. We also saw a hand specialist in the physical therapist deprtment and she thought we should start bracing. We had braces made while waiting for our next appointment with the gastrinologist. Keian seems to be ok with them. He is to wear them only at night and only for a few ours.
We then went to the gastrinologist and she suggested that we start testing Keian's blood sugar after eating. I doubt we will find anything. She also seemed to agree with me that the NG-tube was still needed and that we shouldn't be talked into a regular G-tube by any other doctors.
The ride home from Seattle was a bit tiresome. There was a huge wreck on the freeway during rush hour. I decided just to pull over and walk around. We ended up getting home at 10pm. Needless to say I am exahsted!!!!! I think Keian is finally glad to be home, I know I am.

Yeah!!!!! Finally some good news after the long and horrible week we have had. We just finished our visit with the radiologist and doing a swallow study. Keian is no longer aspirating when he eats an ounce by mouth!!!! We still need the NG-tube however because of his reflux and how he throws up when he does eat by mouth. We found Keian gets lots of gas in his stomach from all of the gulping he does. Plus with Keain's blood sugar dropping so low sometimes it is so much safer to keep him on the NG feeding pump at night to keep his blood sugar constant. We do not need any more scares with seizures like Monday. We have 2 more appointments to go today. We are sitting and waiting for physical therapy to make a new wedge and then we see the gastrinologist to se if there is anything more they can do for his reflux.
I'm suspecting they are going to be telling me nothind different than I already know at the present time however they may change the amount of his reflux meds. We will just have to wait and see.

Today we came home from the local hospital for the second time in a week. Keain has been dealing with feeding issues all his life and things just seem to be getting worse. Last week we woke up to a 101 fever under the arm and found that Keian had a bladder infection. We also found that his blood sugar was incredibly low. After being treated for a few days and learning Keain has only one kidney, we went home and found everything to be fine for the first day. The next morning we took Lee to work and as we were walking in the door Keain threw up and withing 5 minutes started having seziures. We were back at the hospital doing more tests. His blood sugar was really low again. He was admitted and we changed his feeding schedual. So far it is working. Tomorrow we go to Children's Hopital to see the Gastrinologist and Pulmonologist. I am nervous about going over the pass by myself with him. What if something happens and I can't get help? The doctor's came up with a good solution and I think we'll be ok. He is finally home and I happy to be in my own bed again. I just hope they don't find something wrong and admitt him again up in Seattle. I will be taking along items just in case because I don't want to be stranded with nothing to wear.