I hate when you go down. I hate the feeling you give my stomach when you go down. I hate how you make me sigh with relief for just a split second, just to go down even more. I hate the way that when you lower I can see my babys nose flare, and I hate even more that he gasps for a breath and wakes up, just to have it happen all over. Really, these 83s at night time need to stop, you really need to stay above 92, and I wont complain!
Sincerely yours,
Kaesyns worried Mommy
This week is coming up too fast. Its going to be such a stressful week. My schedule:
Monday-Topeka for kids baptism clothing
Tuesday-Me an appt. Gabby-eye dr
Wed. NEUROSURGEON at childrens Mercy
Thursday- get this house ready for lets see, 8 or more guests. Plan out Baptism party that will be 3 days afterthis
Friday-Appt at KU med cent with cardiology. and alll my family is coming in SUPER EXCITED
Saturday- My nephew Eyans birthday party.
And Phoenixs Poker run! Super excited!
Sunday- My kids get baptised, and we are celebrating that with family and close friends!
This week will be bringing in a lot of happiness and joy. I really hope that Wed does not change that for us. I really hope that I am ready for the worst news. I say that I am ready and I have prepared to accept the worse, but really how am I tsupposed to know for sure I can be okay with it if I havent heard it? However, I just know that they are right. I know that most likely Kaesyn does have hydrocephalus. I hate that word now. More than anything. Other than seein Kaesyns o2 levels on his pulse ox lower than 90. I really hate that to.
I am stressed beyond what I need to be right now. People keep throwing things at me. These past few days, I hurt so bad. My feet hurt, my legs hurt, my back is stiff, my head hurts. And I hear how bad I need to lose weight. Im pretty sure that I can not do that right now. Really? Do people just not get what I have to deal with? Do they just not get my stress levels right now? I do my best at being able to deal with this. I do. But right now, I can not focus on myself. My blood pressure has been higher than normal just trying to get Kaesyn figured out. What is wrong with my son? I just hope we can cross off these specialists one by one. I want answers. I want to hear good things. Never once have we came out of an appt with something GOOD. We may come out hearing that this or that turned out okay, however THIS or That didnt. And wam bam, something new is added on to the list. I DO NOT GET IT. WHY? He does not deserve this! Why cant I be the one strggling to breath? Why cant I be the one who can not see right? Why can I not be the one that has to get IVs put in every couple of months so that I can see if I may possibly need surgery on my brain? Why does it have to be him? I know its what God has planned. I have very strong faith, and I know God will guide not just Kaesyn and I but the rest of my family as well.
I feel so... pulled? Im not sure if thats the word, but I feel like all these Doctors have me by one arm, saying this is whats wrong, this is what might be wrong, this is what we need to do to figure this out, while my family has me by the other saying Kaesyn is fine, Kaesyn doesnt have ANYTHING wrong, Kaesyn is a normal healthy 1 year old boy, stop worrying. Of course I hope my family is right, I want to go with what they say. but in my heart I know the Doctors are right. I am with Kaesyn 24 hours a day to know, that he does not breath right. To know that sometimes he refuses to eat. I see the way he looks at people, and other thigns to know something is infact wrong with his vision. I know that he is prettty developmentally delayed, I see it everyday. Ughhh with all that said, I know that the Lord will get us through this week, he has us in his hands right now and he will guide me where I am supposed to go. Thank you for our Lord!!
I am so Thankful that Saturday will be another amazing day! We will end our stressful week Fighting for Phoenix and his Benefit Poker run, so we can help find a cure for cystic fibrosis. It hits close to home. I will never ever ever know the struggles of CF or how hard it is to see your child go through it. But at one point in time they thought that Kaesyn had CF. We waited almost a month to know for sure. So I am right there with Phoenixs amazing mother helping them find this cure and raising awareness. Not until recently did I even know how horrible CF was. I researched it, and I knew it was painful, but I never knew to what extent it was until reading Conners story. Again I can not say how much his story has touched my heart. Everytime I see red, or even see or hear the word love, all I can think about is him and his family.
I pray for people everyday. I have a special place in my heart for the people that have touched me and I keep them in my prayers every day, and I keep them in my heart, all day everyday. Conner and his mommy has definetly imprinted the words LOVE LOVE LOVE in big red letters in my heart. Just as Phoenix and his mommy has imprinted a huge smile and hug right next to them. I can not picture anyone as wonderful as them two moms are and I hope that if it needs to be I can be just as inspiring, and happy as they are!!!!!
As I sign off I would like to mention, that Kaesyn strangely enough reading 98%, it never does that. Ever. Think he has a special Angel with him tonight. I pray it stays this way all night long!!(Thanks to the Lord, I know its possible)
Hope everyone had a great 4th of July! (We stayed in all day because of the rain!!!)
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