ER at 2 AM

Early this morning, well at 1:30 to be exact, Ayiana woke again just has she had the night before with chills. This time she was moaning and since her fever was not letting up from the past 2 days I thought for a moment then sighed and called my mom. Thomas was working and getting away from calls then going back to station would take longer so I asked my wonderful mom at 1:45 am to come over and stay with Liam so I could take Ayiana to the hospital. I called Thomas and told him, just so he would know, he was arriving on an intense call so it was a very short conversation. As I was waiting for my mom Ayiana told me "I'm counting on her." Seemed very movie drama like to me, but she was sincere that Grandma was here hero for coming so we could get her some help. We made it to children's just after 2, and there was a bit of a wait, not surprising to me even if I was hopeful there would not be. After about 1 hour, Thomas showed up, he was so frustrated when I had called since he obviously could not leave quickly, but his sergeant was kind and let him leave as soon as they were free from the call. Half hour later we went back, as the nurse was taking Ayiana's vitals (103.6 fever, WITH Motrin on board!) he thanked her quietly for not screaming her head off as the little girl in the next bed was doing pretty well for the next 2 hours. Ayiana was still whitty and said "Oh I only cry when I don't get my way!" Thomas and I shared glances then chuckled, oh the honestly of a 5 year old! Short time later the doctor walks in and asks some questions, the best one was when he asked if she was having any problems peeing... She responded "No, but sometimes I pee in the bath tub" lol. The doctor did not miss a beat asked if anyone else is in the tub with her, she said no, thank goodness, otherwise I may have turned an even brighter shade of red! So Ayiana had to give a urnine sample, last time at the doctors office this was a mess because she could not hold it long enough for us to use the cleaning toliette so this time it was done prior to getting to the potty itself....but still somehow or another pee went EVERYWHERE! This would not have been such a big deal except they did not have any clean gowns in her size (and she no panties with her footed PJ's)...so we had left her PJ's on and they where now drenched. Thomas had to go home for a change of clothes, in the mean time Ayiana had an ice pop...the doctor gave me one too lol must have looked at that point like I needed it! We went to x-ray for her chest and then hung out until all results and thankfully Thomas was back. Conclusion, she has a small infection at the bottom of her right lung, two types of antibotics given and back home. Everyone was back asleep by 6, Liam woke at 7:30, so I am now officially on 5 hours of sleep for the day, off to make some tea hoping the caffine kicks in fast!

Sweetest Daughter and Eggstravagansa

Wednesday when I picked up Ayiana from school she was excited, she got to go to the treasure box not once but TWICE! Big deal for her always, the first time she went for a "WOW" paper, this is defined as three sentences written with Uppercase at the beginning, proper spacing, a period at the end, and of course phonetically spelled words. Her sentence's were "Is she nis yes she nis. I dot like ben tretid men. Ma u pes sop bein men." and now for the translation "Is she nice, yes she's nice. I do not like being treated mean. May you please stop being mean."  So she got a lollipop for herself the first trip. The second time she was quiet so she and two other children got to go, she told me, if there had been another lollipop she was going to get it for Liam, but there wasn't so she got a Reece's cup for Dad. Aww can you say, so thoughtful! I don't know at 5 years old if I would have thought of my brother then my dad going to a treasure chest lol. It was perfect timing for her sweetness to shine to, earlier in the day we discovered UPS had dropped a package on our porch the night before.... Thomas said he saw the truck driving away around 10 PM! It was her "Sweetest Daughter Ever" trophy. The one we promised when she had to miss her first day of school for being sick.

Which was also great timing in another way because Wednesday afternoon she started to run a fever, have junk in her eyes and had to stay home Thursday. I thought she would be all up and running today but middle of the night last night she crawled into my bed, and started having chills. She hadn't had ibuprofen since 3 in the afternoon and by 1:30 am her body was rejecting the idea of stopping that, poor baby, I think the last time I saw her with chill's she was 2! So with a fever still lingering (and cough, ear ache, stomach upset...she had a LONG list of symptoms) she had to stay home from school today as well :( This was especially hard today, because it was their special Easter Celebration day, and they had an egg hunt at recess and party afterwards which she of course missed. We did dye eggs, which she thought was fun and seemed to take her mind off of missing out of the fun at school. I came to the conclusion after looking at the eggs, that she is MUCH more creative then I as well.

Fishing and refinance

Yesterday after school Thomas took Ayiana fishing, she had been asking to go again for some time. They did not catch anything but still came home with 3 fish a man there gave them, so I gutted and fried two and gutted and froze the third. They where pretty good but I need to really look up better cutting instructions for getting bones of Trout out easier lol. Of course after Ayiana watched me gut them she wanted a peanut butter and jelly for dinner :) I have to say it is rather gross but nice that the house still smells normal, fresh fish is WAY better then the alternative! While cooking dinner I was also able to refinance our house, how's that for multi taking haha. I had called three previous times but our house is so under water we had never fallen under the guidelines, until evidentally one program that started 2-3 weeks ago and the the one we actually got to use which had just been rolled out this week. Our loan agent said we could not have had better timing! So hopefully by the end of April we will have a 20 year loan (we still owe for 25 years on our current) and will be paying $92 less per month...total savings is over $100,000 for the life of the loan..well gee that's a lot! Best part is we do not have to pay a close or ANYTHING to change the curernt loan, the lender does. So if your house is like ours call your lender, there is no longer a ceiling for home worth to loan amount so even if you have not qualified before you might now.

I can't not wait for Spring break, sleeping in or at least the mornings will be more relaxed will be soo nice! Before then Liam has an Easter Egg hunt for tomorrow and Ayiana on Friday so it should be a fun rest of the week!

School photo's

Ayiana came home yesterday with her spring time school pictures, this one thankfully isn't for the yearbook... can you say "fire marshal Bill?" She asked if we could keep them, as they send them home and then you can pay for the differences or send them back, I said, "Not this time" and left it at that with her but I really do wonder what she was thinking when she took this one? I suppose she was trying to be a silly looking beaver but I hope that this isn't a repeating pattern for school pictures. Thomas talked to her some and I think she got the message...I hope at least!

This week we bit the bullet and have been sending Liam to school everyday for the shorter time, we have figured out he does not cry through the halls to class as long as I sing "The Ants Go Marching On" and that it is best to distract him and I simply walk away without another word. Usually the rule is to make sure and say "Bye" when you leave a younger child but in Liam's case that seems to just upset him more. So a simple "see ya" seems to work better. Thomas thinks, and I have to agree, that maybe he thinks bye-bye means for longer, since when Dad says bye, or Grandparents do, is it usually for a long time not just an hour and a half... So at least Awe are getting better school drop offs. His teacher says he still fusses some and says he does not like to work, which I find odd since he does so well working for his OT (occupational therapist) but I suppose or hope that will work out for him too. At least most of the water works have stopped. I was talking to his PT (physical therapist) about a previous comment from his teacher about him still wanting to play all the time. Which I brought up after his PT was so excited watching him play, and she brought a very valid point as well....he couldn't play the way he wanted for SO long since he could not move like a typical child, he had to play with whatever was handed or in range for reaching or scooting to so OF COURSE he still wants to play lol! At least now I feel better able to address the "he still likes to play a lot" better then next time. Last time I said nothing just raised my eye brows and smiled...and later actually did laugh some, thinking he is just a 3 year old right? If it comes up again I will be better prepared to bring in some "Liam perspective" too. It's so hard to switch to teachers that have not seen how far he has come, in some ways I know that they will push him more, as I am seeing but it also leaves for no knowledge of the mountains we've been through to get to where we are today.

Dat Bunny and Sunday Snow

Saturday morning Ayiana had her schools Pancake Breakfast and it rained miserably. We tried to make the best of it though and Ayiana even tried to bounce in the super soaked bounce houses, but it was so windy and cold...then Liam sat/fell in a puddle and was soaked on his whole bottom half so we decided to head for home. Thomas was carrying Ayiana and I Liam, on the way out I had opened my umbrella and the wind caught it and whipped it open the "opposite" way, I was laughing as I struggled all the way to the car to get it back to normal... then Liam said something he's been saying for the last week, but I couldn't figure it out... "Dat Bunny"... oh my goodness CLICK in moms head, "that's funny" I laughed even harder then and when we all got in the car I told Ayiana and Thomas and we all laughed about that. I've enjoyed telling that story a few times with Liam nearby because each time I talk about he smiles SO big.... sometimes those little communication break through's are the sweetest things ever. So if you ever hear Liam say "bunny" rethink the word, he can't say an "f" yet but he's sure trying to tell us things, and he was right it really was funny!
Sunday morning Thomas brought home snow in his lunch box, one of his coworkers had come down from the mountains and his truck bed was full of it, so he and the kids had a Sunday morning Snow ball fight... I took loads of photos, I think they speak for themselves..... Ayiana was amused, Liam thought it was bunny, and Thomas was like a kid himself... the cat wondered, and the dog chased snow balls like her tennis balls!

Happy St. Patty's Day

Last week Ayiana's teacher sent notes home that they needed Leprechaun traps sent to school, to build them out of items in the home no bigger then a shoe box. Ayiana was set on using this blue basket, so Thomas helped construct a pulley type system. When you pick up the pot of gold in the middle the basket drops down, Ayiana played with it for almost 2 hours last weekend. 

We sent it to school on Monday and it came home Friday, she proclaimed that they had caught 7 Leprechauns in her class and that they had left green foot prints on the desks and a bucket of candy (rolo's) lol. This age is SO fun, still believing fanciful imaginary tales I Love it!  

I cooked a big St. Patty's meal last night because Thomas had training during the day and works on the "true" day, this way he could enjoy his Guinness with his meal...we are "McCarty's" after all! Corned beef with Roasted Cabbage Sandwiches and Mash potato's for dinner, Leprechaun Pie (pistachio pudding/cream cheese mix) for desert.... yum it was tasty!

This morning we are off to a Pancake breakfast for Ayiana's school, hope the rain isn't too bad! Of course I will be taking pictures there too, it should be fun!

School time woes

Yesterday Ayiana and I left early to pick up Liam, well to watch him off in the distance in his classroom. I was still just so uncertain why he disliked school so much. I watched quietly as he had to do a few transitions... he simply doesn't understand them, a preschool class moves along pretty fast and Liam never has. His teacher had taken him from the washroom today instead of me going all the way in to the cafeteria and seating him, she said that was better. I could tell she was still wondering my thoughts as I quietly watched my son, and after a few brief bits of conversation I finally said "I'm just trying to figure out how to best help my son, I'm not blaming you guys"... and that seemed to seriously break down some walls. It was abundantly clear to me today that he is confused, confused when buckets of toys are quickly moved, confused why he has to get up for a diaper change in the middle of songs, and is stemming (repetitive behavior used to try and regulate emotion) with his head (for him this looks like shaking "No" but on crack). He's trying his best to understand and regulate his emotions, his teacher is trying, I'm trying... that's all we can keep doing. His teacher brought up that she thought of something the other day and thinks it could help. A social story, where she will take pictures around the school, friends in his class, teachers, and then make them into a book.... I think that might help too. She said she would have that ready for him soon, well probably right after Easter break, in the mean time I will try to find social stories online too. She also shared that her daughter is 29, and had lots of medical needs and therapies in the first few years too, that she also has special needs...so she really does understand. I don't know why that helped ME, but it did, I know that she sees the adult side of things too, something I obviously don't have experience with but she "gets" the journey on another level that until I get there I won't. Since, ultimately I want Liam to be the best adult he can be and I know as a teacher she's trying, heck she hit everything I had been worried about without me bringing it up even (cafeteria noise, over-stimulation etc) I feel more confident now leaving him, and I just pray that things get better for him. The tears streaming down my face right now show that too....its so very hard to sit and watch your child not know how to cope with something so innate in most children. Ultimately, he does have to learn how to cope in this setting, like it or not, it will be part of his life for a LONG time and if there is any time to get understanding situated its now not later.  I also have to say his teachers where also very gracious about not throwing me under the bus for the rash on his bottom, they both said (his teacher team teaches with the SDC Kinder teacher) that we can only do so much and they both remember those days, sigh... okay so they aren't looking at me like "bad mommy" either. Ayiana has also been officially told she can be the snack helper everyday at 2, so technically we will be there for 2 hours, just that the last 30 minutes sister and I will also be there. I can't tell you how excited Ayiana is to be the helper,  she also enjoyed a conversation with one of Liam's classmates today, as they sat and ate snack next to each other then she helped push her on the swing, she was also loved on with pats on the back from one of the aides one, who was retired but subbing that day, she patted Ayiana's back and just made her feel really included... it was very sweet to watch because of course she loved feeling included too, I'm so glad that the teachers and aids are able to see this and are okay with that as well. Off for a bite of breakfast, tomorrow is St. Patty's day and we're beginning our festivities today and I can't wait to share them tomorrow!

Pizza and Poop

Ayiana has this habit of having many conversations/jokes involving either Pizza or Poop, we ask for no potty talk constantly, and so it then becomes Pizza.... don't ask how it started we have no idea. Last night I'm sitting in the den and I hear from the living room Thomas ask Ayiana to stop the Pizza and Poo poo talk, she asks then "What about pee pee" I try to quietly laugh because this is just so funny sometimes. She is so much like her father in that regard, always trying to have a smart butt retort! Last nights provided chuckles from me for quite some time, I don't know what those conversations will turn into as she gets older but I think that it will be down right funny! 

This morning Liam had a follow up with the ENT doctor, his tubes and ears look great. He had an audiology appointment Monday that went great as well, so he is back to hearing well again...until his ears get clogged (which I'm hopeful they won't) but with his sub-mucous cleft its highly unlikely even according to his ENT. He was very good at playing there today

After his appointment he needed a diaper change, so I did that in the trunk of the car, one of our more normal locations because it is big enough to do it in, I have a blanket for padding and I know its cleaner then many restrooms. The little changing tables in restrooms also are not big enough any more and neither is the inside of the car! Any case, I feel so bad, since Monday nights "pooping at midnight" we have been fighting a diaper rash. Today it was better in some areas, and in one area much worse, it bleed some as I wiped him clean! When we got home I put antibiotic ointment on it and a waterproof band aid, I can not believe how hard it has been to get rid of this rash. I am thankful it is in a small area but it certainly makes me feel horrible even though I know I change his diaper every 2 hours during the day, Sigh... if only I could get him to understand he really needs to tell me when he goes RIGHT away not waiting for mommy to smell it (as of late there has been very little of that as well...just adding to the problem). I leave a diaper out and the wipes and ask that if he can't say "poo poo" that he grabs one and brings it to me, but he hasn't caught on to that yet. We have even been letting him roam the house nude trying to "air" his bottom and last night after his shower his sister got him a flashlight and he played in the closet with it lol... 

Liam has school today, so we'll see how he does. I don't even know if they can put cream on his bottom after changing him...sigh. I hope that they don't feel this mommy hasn't been trying enough to rid his rash :( and I hate that it always feels that I'm "in the spotlight" per say too... if you have a special needs child I'm sure you will know what I mean! We'll we're off to school, wish us luck!

Sandwich Slides and Alligator Tears

Thankfully everyone is doing better now, as of yesterday afternoon Ayiana was running wind sprints through the house and coughing minimally and Liam was playing as usual. Let me explain usual for Liam. I went out of the living room to go potty, came back in and Liam had found one quarter of Ayiana's PB and J sandwich from the coffee table. It was a triangle shape and in Liam fashion he takes it places it on our living room window sill; then it becomes a slide for whatever object he can find. This time it was one of those window clings, a green clover we had on the window for St. Patty's day. I took some pictures to show this affect, it isn't something I would ever think to do with a sandwich slice and clover though let me tell you that!

This morning we had our normal "Ayiana's going to school send off." This includes crying throughout the parking lot up and back to the cafeteria to drop her off and then better once in the car.... I've tried every angle as a mom to help Liam understand that 1. Ayiana likes school 2. He can't stay with her, she is in Kindergarten and that's for 5/6 year old's 3. Its okay to miss her but throwing a tantrum in the parking lot does no good......

Hoping this phase passes quickly! Off to do the pile of dishes in the sink, I wish I was the Genie in "I Dream of Genie"!

Taking it back

So yesterday it appeared Liam took the daylight savings time well, but in his usual fashion I should have just done a "wait"... I took Ayiana to dance class last night, (here is proof, lol, she played an elephant for a part of the class :)

Her class goes until 6:15, so we get home around 6:30, and wouldn't you know who fell asleep on the floor in the kitchen! Thomas said he was playing with the fridge magnet toy and then next thing asleep on the floor, he is funny how he can do that, hard uncomfortable floor, head wedged so the top of it meets the door of the refrigerator... he woke 15 minutes later and Thomas tried to keep him up but that was no use so he laid him in bed and he went down for the night (sort of). Fast forward to Ayiana's bed time, she is coughing and her stomach is hurting, she had mentioned earlier on the way to dance it was bothering her, but said nothing after so I let it go...that was until 9:30 at night. Gave her some medication and prayed she would sleep, which she finally did just after 10 (WAY to late for a school night). Then Liam wakes, unhappily, I go in to check on him, he's pooped in his diaper at some point, peed out of it now as well. So I change his very red bottom, his clothes, and his bedding and back to sleep he goes, I head back to bed at 10:20ish. Fast forward to 2:30 in the morning, Liam's up again, this time happily as in "I'm ready for the morning happy".... I go in and ask him what he was wanting, he signs "eat" followed by his best give at saying "breakfast", well we're up now, I get a bowl of cereal and he eats it under the small lamp in his room but now what. This mama is tired, my throat is hurting and I'm now coughing what Ayiana had been earlier. So I take Liam into our room, poor Thomas was on days off and flexes his sleep so he had only had 3 hours the day before but with me not feeling well I wasn't going to the living room, my body just couldn't hang with that tonight.  Liam watches a few signing times from youtube on the IPAD but then gets bored and wants off the bed, so I get up and grab a bucket of toys from his room and close our bedroom door. He plays with all sorts of wonderful things in our room, for the next 2 HOURS.... Thomas and I each peeping an eye every so often, but he's pretty babbly loud so we can tell where he's at. He of course only plays with 3 of the toys out of his whole bucket the rest of the time he manages to tip the small ottoman of the glider rocker in our room and watch it sway back and forth, then finds the cord to the ipad charger and swings it wildly on the floor like he's going to rope something. Thomas passes some gas at one point then, and Liam laughs hysterically, we look at each other, and say "hard to be mad isn't it" lol. Then as I'm listening to him, something happens by our door, which is around a small corner and all the sudden I hear him saying "open, open, open" and then scratching of fingernails on the other side of the door..... he learned to open doors last night! Little stinker! After that I got up and put him back to bed, it had been 2 1/2 hours, and he fell back asleep. Morning came and Ayiana was still coughing and her nose is completely clogged so with some hesitation by her, we decided she would have to miss her first day of Kindergarten, she was a bit sad because she can't get the trophy for perfect attendance but I promised her one for being the "Sweetest Daughter Ever". We all went back to bed, some longer then others, for some more much needed rest.

Time changes and then comes Monday

So time changed yesterday, which leads to less sleep for most...except Liam who had already been moving his clock back by himself starting 3 weeks ago, he adapted to this time change with virtually no hang ups...which I guess makes up for that fact that the pink eye he had on his right side a week ago is now in his left so he will be getting drops in both eyes for the next week, and can not go to school today because of it. Back to time changes though.....Ayiana, if given the opportunity is a night owl, and this time change was pretty hard for her. She didn't get to sleep until a little past 9 last night although we where done with book reading and snack by 8:30, she also came into my room at 2:30 AM having had a bad dream. So up she came into the bed next to me, and then she proceeded to cough and cough until I gave her the inhaler and her coughing stopped about 15 minutes later. By this time we had both been "up" in the middle of the night for about 45 minutes, 7 AM came much to soon for both of us. I think she will certainly need a nap after school, as she also has dance class tonight.

Yesterday after church we stayed at the playground for a while, Liam gave his clearest "hi moma" yet...so much so even Ayiana stopped playing and looked over at me with the biggest eyes and said "That was super clear!" lol....such an awesome sister she is, how many 5 year old's would take note of something like that? In the afternoon Ayiana went to a birthday party at Build-a-Bear, so Liam and I cruised the mall waiting. She had wanted me to leave her, so I did, but didn't want to wander to far. Liam and I shared a candied apple, when I asked if he wanted an apple he immediately signed apple and then I told him it would have candy around it and he was pretty excited. We played outside on some rock formations, those kind that in the summer spout water, and he enjoyed it although I had to stand right next to the one he was on! 

We walked down the mall some, and for the most part he did well, stopping only at the outside of the Disney store and pointing to Pluto and signing dog, then saying "ball" as it was next to him then saying his best "Minnie mouse", he could have stayed there for a while but when I said we would find somewhere else to play he got in his stroller and we continued. Later he found butterfly decorations at the display window of Children's Place, he tries to sign that but its a hard one, he also tries to say it but that too is hard. I wonder what people must think as they walk by us and see him so excited with his face as close as possible to these windows lol. We also went in to Bath and Body and smelled things, he really enjoyed that and was a little upset when we had to leave... and at another clothing store he felt all of the tutu's... I'm sure the cashier there thought we where nuts. I just don't care anymore, he's happy, not hurting or destroying anything and we had time to kill so why not right? I think having a camera on Liam facing outward and having his own adventure show would be pretty fun at times, how many adults ever stop like he does, notice the little things in a display case, or the particular feel of clothing, delicate details of a flower? Liam REALLY notices the little things in life that make the world beautiful, and as hard as the adventure is at times (because it bucks all kinds of social norms) I'm glad that God choose me to be in the seat right next to him!

Ah... Saturday

Saturday morning in the McCarty's house is usually much less active then any other morning, and for that I am thankful. Of course that doesn't mean sleeping in is ever an option, Liam is a morning child and never sleeps past 7:30 (on a good morning). This morning I got to stay in bed until 8 minutes past 7, and only because 10 minutes earlier I heard Ayiana going into her brothers room...turning on the light and talking to him. She came in at 7:08 and declared Liam was awake and that she had gotten him a toy to play with, such a wonderful second mommy to him lol. Unlike many parents of toddlers, who have children get themselves out of bed and cause a ruckus in the house somewhere early in the morning...that is one thing I have not had to worry over with him. Liam still stays in his bed until I get him out, and its not that it was ever planned that way; it's just each time he has tried to get out of his bed in the past he has fallen out rather then hoisting over the safety rails to the other side. This is something by far most kids even at 18 months can do, but he just doesn't have the upper body strength yet to do it, and is now fearful of even trying. This makes life easier in some ways but is also slightly saddening to me, because it is one step of independence he doesn't yet possess. Independence is one of the greatest things to teach my kids, this I know, and I am thankful that Ayiana is growing quickly in that regard. Last night I was talking a shower and she came in and asked if she could make hot cocoa, this is her favorite thing to drink by far and she has it religiously every morning...its like her morning coffee. I use to think that probably wasn't the best nutrition option but when compared to other breakfast options, it is higher in calories (which she needs) and has just as many vitamins (we use Nesquik), so that's her morning routine. In any case, she made it all by herself last night, and then told me she did really good pouring the milk but made some mess with the chocolate powder. I asked if she cleaned it or I would need to do that, she said it would be a good surprise when I get into the kitchen. I went in and indeed my kitchen was still clean... hallelujah she not only made her own drink, but she cleaned up after herself, YES! For her skills, she also climbed the monkey bars several times at the park yesterday afternoon, this was something she had been trying for a while now, but hadn't been able to accomplish...she was so happy, I wished I had the camera for her face when she went through the first time, she was just beaming! I love watching her grow into a little lady, she has such a sweet spirit! Well, my 10 minutes of "blog" time is about to end, Liam is done with his food and we are off to Grandma's house, but I sincerely hope you and yours have a blessed weekend, I'll write again Monday!

Oh Separation Anxiety

Oh boy, so Liam started preschool 2 days a week at the end of January. He was excited for his first day and that was the end of that excitement. Every day except one, he has screamed, cried, pouted, and had major melt downs; and on some days he continues to cry and be upset the rest of the FULL time there! This has affected everyone in our family, Ayiana probably the hardest...she can not understand why we would turn and leave him when he is crying, I've tried to explain this to her many times but at 5 that's a hard concept. Anyhow, its getting worse instead of what we hoped would be short lived. Now not only does he cry when I drop him off at school, but he also cries when Ayiana gets dropped off for her school day, or when we leave Grandpa...yes my Dad is his buddy and every Saturday when we pull away from their house crying occurs for a moment or two. Liam also did this when my parents came to our house briefly last week to drop off some wood for our fireplace, he was not only crying that time but utterly mad that they where not staying longer, turned red shook his little hands and screamed. I know that this is a growing-up thing but I had hoped that the little amounts he did about a year ago was enough to skirt the issue. His teacher at school would like him to start going 5 days a week for shorter times, so after Easter break we will try that idea, instead of 2 1/2 hours 2x's per week, we will go to 1 hour every day, I am glad that we live close by enough for that to possibly work...we can stretch time from there, of course the school year will end probably before we can do a full stretch of time and then there's Summer break before going back in August. I am secretly hoping (well I guess its not much a secret now lol) that when he goes back in August it will all be magically better, I'm sure that's probably pie-in-the-sky, but a mom can always dream, right?

Life is precious

"[] as human beings we are more alike than we are unalike." ~Maya Angelou

So many thoughts today, where to start... first off I am praying for a family that lost there little boy sometime in the last 1/2 day, I've never met them, but its a pretty small world when it comes to the Fresno area and Children's hospital. This little one was born with half a heart, and he was born into heaven today. It always brings new perspective to my daily struggles when I wake and read on Facebook or baby center about the loss of a child, and I should say in the blogs and forums I frequent this happens around once-a-week . I am certainly trying to be more like Jesus and have compassion for people, regardless of what they are going through, because ultimately everyone IS having something troublesome in their life and they really need to feel loved.

I read about a family in Sunnyvale, CA this morning as well, it was about a mom who shot her 22 year old son (who had autism) and then herself, pretty sad, and one might think she didn't have support...but it sounds like she really did have a group of other moms in her life. I guess for me where my faith steps in, and I ask for guidance from the Lord daily. I pray no one would ever feel so hopeless that they feel the need to do as this mother did and also that those that I know would feel welcomed by me enough to share their burdens so that we can create hope together. Being part of a group is great but ultimately each person must feel open enough to share their struggles without judgement so hope can be created. I thought about this scripture from my current bible study, which happen to be on hope last night; "We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. (Rom. 5:3-4, NIV). Seems ironic to rejoice in suffering, but when we persevere and share our experiences with others we can create hope. I can think of numerous organizations formed under this principle; for example: Noah's Never Ending Rainbow, Chromosome 18 Registry, Molly Bear Foundation and many more... each organization had a family who needed help or lost a child, but that family took their sorrow and made it into something to help others, bring others hope. If you think for a minute I'm sure you can think of some too! Liam needs lunch now but I have one last point.....

If you are ever feeling hopeless it is my hope you would call on me to help, I promise to do all I can!

Starting the new blog

So I initially started a blog almost 2 years ago, I posted once lol and time has obviously past so here I go trying to start again. My goal is to post at least once a week, I think that is a very obtainable goal but we will see what reality really does with that!

Did you know that this month is Trisomy Awareness month? You may not even know what Trisomy even is...I know prior to having Liam I knew very little about genetics and names, so I'll give a small education bit here and then explain why it is important to our family. When a baby is conceived it is given 23 chromosomes from both his/her mother and father, they are numbered 1-22 and then the 23rd is the sex chromosome. With an X given from mom and either a X (for girls) or Y (for boys) from Dad. This lands a person with 46 total chromosomes in each cell of their body, this is where our genes are passed down from our parents and powers everything within our body regarding growing, hair color, eye color etc. When a person has a Trisomy, they end up with not 46 but 47 chromosomes, with one pairing having 3 copies instead of the typical 2. The most commonly known Trisomy is Trisomy 21 also known as Down Syndrome. The next two are Trisomy 18 (also called Edwards Syndrome), and Trisomy 13 (also called Patau Syndrome), both which often lead to death in infancy. Triple copies can occur in many different forms as well but I will save the additional details as this might be a bit much to follow as is.

So now the question... Why is this an important lesson to the McCarty family? When Liam was born, he had a large hole in his heart (called a Ventricular Septal Defect, VSD), he has feet that are oddly shaped, he had jaundice, had a difficult time eating and the list lengthened quickly. Our cardiologist suggested we complete genetic testing at that time, and just prior to Liam's open heart surgery we did. When he was 5 months old we found out that he has a duplication on his 18th chromosome. This is not considered a full Trisomy by any means, but the point is some of his genes are duplicated and for technical purposes we can say he has a partial Trisomy 18P... (each chromosome has two piece that connect together. They are the q arm -which is long; and a p arm- which is shorter...his duplication is in the middle of the p arm). So, although Liam is less affected then children with a full duplication, he is none-the-less affected. The really ironic part of all of this is that I share the same duplication and seem unaffected. I have however researched literally hours since his birth and know that females with changes on the 18th chromosome are often less affected, in our case I have Mitral valve prolapse (a heart valve sticks) and some bouts of anxiety and little else.

So I wanted to share information in celebration of Trisomy awareness month I hope you learned something knew today!