The good and the bad!

So our sweet little Ikaika give us quite the scare on Sunday, he has been crawling more and we have noticed he uses a lot of energy and starts panting! He was in the hospital two weeks ago because of croup but he has not had any symptoms of croup since we went home from the hospital! So in the middle of the night Sunday we hear him struggling to breathe , he was flapping his arms and kicking his legs and really really struggling to breathe!! So I rushed him to the ER  where they gave him breathing treatments and steroids, they told me it was croup again which I did not believe them! So they took some x rays and they still saw the lump in his lungs and well I suggested maybe he has asthma so now we will be seeing an ENT this week and going from there, they are saying most likely need to scope him! We sure do love him and know that everything will be fine!

Well KeKoa has had quite the week lots of doctor apts, lots of melt downs, and also some good smiles! We met with Dr. Hancock who is a Hematologist/ oncologist and it was a long appt and a lot to take in. First off he explained that most children with cancer usually appear very sick and they do not get better but with that being said there are those cases where they dont see the cancer until its very strong and there are cases of Chronic Leukemia and they have only seen one child have that. He explained that he did not think KeKoa had cancer but he can not say that for sure until they go in do blood work and maybe take some bone marrow. He then discussed with  me about genetic disorder and metabolic genetic disorders. He pulled out his phone and called primary childrens Hospital which Koa has been on a waiting list for genetic testing they told us there were 300 kids in front of him, so dr, Hancock called and spoke the genetic's doctor and said I have being working for 30 years and I have only had two times in my career where I feel very strongly about a patient, and I have this two year old boy in my office whom I feel very strongly that he needs genetic testing done now because his little body is just withering away. To hear that was hard as a mother because lets be honest you know things are hard when your kids have health problems and sometimes you feel like you can be over exaggerating things or worrying to much but that made my heart ache to know that the fears I  have had are some what true! On the positive note I am so grateful we will be seeing the genetic's doctor on February 10th and start hopefully getting some more answer's. Next Thursday they will start more blood work and then he has a sweat test on February 10th to see if he may have cystic Fibrosis, which to be honest I am nervous about this test because they put things on him to make him sweat for two hours and with his little weak body I just hope he can handle that. I asked the doctors why they think he has it because I thought it had to do with his lungs which he doesnt seem to have problems with that but he gets infections all the time, gets croup and infections very very easily and lots of sinus issues. Cystic Fibrosis has to do with the cells and sometimes they get sticky and create thick mucus not just in the lungs but in your sinuses which is similar to one of Koa's symptoms! Today we went to the neurologist to find out the results from Koa's sleep study because he wakes up all night and randomly falls asleep through out the day! So we found out that his brain arouses 24 times in one hour because of muscles spasms and his body flinching or maybe possible seizures as well but that broke my heart that he is not getting sleep and that he is in a lot of pain and that his body is getting weaker and they need to take muscle biopsies. They are putting him on medicine to hopefully help his body relax while he sleeps! They found that all he acid levels in his body are way way way high and that he may carry an extra x chromosome but we will not know for sure until they start doing all the genetic testing. Most people that have an extra x chromosome have down syndrome handicap which KeKoa does not appear to be handicap but we will see what the lord has in store for our Koa and we pray for more answers. I guess as a mother I just hope they find away to help him, sometimes you think oh I would rather him have this certain thing so that they can treat it and help him besides something that they cant do much for. It is such a roller coaster of emotions and I pray that I am strong enough for Koa to help him through this life and what ever the lord has in store for him. I know its okay to cry and feel sorry for him and my self and the situation but then I have to pick my self up and be positive and live and enjoy the now and not worry about the future and all the things that could go wrong or happen! I know I have to rely on my family and the lord, have faith, surround my self with good positive things and reading my scriptures and anything spiritual and uplifting! Its learning to enjoy the little things for me and letting other things go like lets be honest my house will not always be clean but its important I love and enjoy children with the good and the bad!

He loves the fish tanks as the doctors office and it brings a huge smile to my face!

My beautiful Jayla is growing up so fast and it makes me want to cry, I wish I could slow down time! I finally got sometime to work on preschool with her when the boys both took a nap! It was so so so much fun and she loved it, her favorite part was getting to glue things! She is so so smart and always asking me if she can go to school or if I have her lunch packed for school! She also is quite the negotiator, every time its bed time she will ask for a drink, or kisses, or stories or prayers for the 3rd. And the other night when I asked her to fold her arms for prayers she said I will fold my arms when you give me back my toys ha ha what is she 16!  She loves to watch movies like her mom! She has been wanting to cook with me lately and I sure do love it today we made banana bread and it was so fun, whenever she spills something she says oh I got it and cleans it up!She always makes me smile and has the cutest little Voice! Im so grateful for my kids!