"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius
Here we are at Tuesday already! Time sure does go by quickly when you are busy! Here is a quick recap of our last couple of days:
Sunday - spent the day cleaning and Mat went in to work for a few hours to work in peace. When he got home, it was time to work in the yard. Even though it is the end of October, we are still experiencing 90 degree days, so the kids put on thier bathing suits and played in the water and with the water table while we worked. They had a great time. Everyone was tired and went to be early!
Monday - no school for any of the kids today. Today was a teacher work day, so everyone was home with me all day. We played and just goofed around. Everyone behaved really well, and we all had fun. It was a rainy day for the most part, so we were stuck inside, but that didn't seem to matter.
Tuesday - Today Arlington and Finley went to school for the day. Cainan had speech therapy this morning and then an appointment for a helmet adjustment and then an appointment with the surgeon. As most of you know, Cainan's palate surgery is on November 12th. So today the surgeon wanted to discuss that surgery with us and what he would be doing. He also wanted to see how Cainan's lip was coming along. We are now massaging it three times a day to break up the scar tissue and soften his lip. Hopefully he will start to look less and less like Elvis overtime. The doctor is going to start giving him injections in his lip to help with that as well. They will do the first one during his next surgery, and then he will get some in the office after that. Fun times! But his head is showing some nice rounding, so his helmet got adjusted - yeah! And speech therapy went well. Cainan still isn't saying much while we are there, but I am getting a lot of good pointers from the therapist that are really helping him progress at home. Tonight we cleaned up because tomorrow we are having a Halloween party before trick or treat. Arlington is so excited!
Some fun stuff: Arlington - she said/did something funny the other day that I wanted to share. We don't let her watch a lot of TV, but she really wanted to watch Scooby Doo on Sunday morning while I was cleaning. I came in the living room and caught her digging around in a cereal box. I asked her what she was doing, and she said, "the TV told me there were prizes in the cereal box, so I am looking for it." That is so great - the TV is now giving her directions.
Finley - learned to say the word "please" and do the sign for it. She is so cute when she says it. She also says "moon". Don't know why. She just likes being cute I guess. But she remains our little "bad baby". That girl is just trouble! She likes mischief very much.
Cainan - learned to say "hi"and "bye" and do the sign for please. We were really impressed. He says hi all the time to people now. The "bye" doesn't come as easy. He is doing a lot more babbling AND a lot LESS drooling. We used to have to change his bib 6-7 times a day. Now we are down to 1-2. I actually see him close his mouth more to swallow and wipe the saliva away from his lips. Yeah! That is great progress.
Here are numerous pictures from the last several days. Enjoy!
Well, today we went to the pumpkins patch for Cainan's first Halloween. Just a brief recap of the last couple of days for us. But before that, I want to say happy birthday to my dad (on the 24th), happy birthday to Zac - Mat's brother (on the 25th) and happy anniversary to my brother AJ and my sister-in-law Tricia! (on the 26th)
Wednesday: I didn't have to work this Wed. I got to come home. We didn't need so much staff, so I got the day off. I was glad because I have been feeling under the weather. Arlington has given me her cold, and I am still feeling it. So I was glad for the time off. I came home and tried to relax, but I still felt like I needed to be somewhat productive around the house! I finished painting in Cainan's room. We are really close to having his room completely done - yeah!
Thursday - Cainan had a small check up today. He just went in for shots - didn't see the doctor, just the medical assistant. They gave him 6 shots, poor guy! Mat took him to the appointment since I was working. He also had some blood drawn because when he was there the last time, they did a lead level and it came back slightly elevated. The normal range is between 0-10, and Cainan's was a 7. The doctor wasn't that surprised since he is from China, but wanted to make sure the level was on its way down. The doctor wasn't concerned, since he was still in the normal range, and said the level should come down to 0 on its own over time, but just wanted to keep an eye on it. We do have a good pediatrician! Just one more thing that had me a little worked up! I feel like we can't get out from underneath the stress! Between Cainan and Finley, we are losing a lot of sleep these days. Cainan went to school after his appointment, but by the end of the day, he had a fever from his shots. (or so we thought at the time!) He was really hot, so when he came home he didn't want to eat much and fell asleep early. We gave him some tylenol and that brought his fever down. But there is a funny story that went along with the doctor's visit. Mat said he and the medical assistant were talking, and she asked how long we have had Cainan. Mat told her, and with ALL seriousness she responded, "so are you going to keep him?" I guess Cainan is our new puppy.
Friday - Cainan felt cool by this morning so we sent him to school. He did well all day. But when he got home in the evening, he didn't want to eat dinner. He didn't eat ANYTHING. That was a first. He just cried and cried, so we put him to bed. We were supposed to go to a trick or treat thing with some friends this evening, but it got rained out. It was good in a way, because Cainan just clearly didn't feel well.
Saturday - Cainan woke up not feeling that well this morning. And wouldn't eat breakfast or lunch! By the time he did finally eat, it had been over 24 hours since he had any food at all. We were pretty upset. We finally got him to eat some fruit and some pediasure after his VERY short nap today. Oh, and by the way, he woke up at 5am! It has been a long day. He was so overtired, that I knew he would take a short nap, and sure enough - one hour later, he was up. He was miserable the entire day. He cried basically non-stop all morning, and all afternoon. Finally after some food he looked a little better, but still not himself. He basically just sat around all evening after we came back from the pumpkin patch, and then we put him to bed after some dinner. His fever is back - not really high, but he is warm. So no helmet for him until it goes down (helmet rules). I gave him some medication before bed, but let's hope he sleeps okay and feels better by tomorrow. I am not sure if he is still feeling the effects of the shots or he is now coming down with something. I wouldn't be surprised with us being sick and he just starting daycare. But his timing is a little bad. With a major surgery in two weeks, we are desparately trying to keep him well. We will see what tomorrow brings.
Anyway - back to the pumpkin patch! One of my favorite trips of the year. We are not big Halloween people, but we love the fall. We have lived in warm weather for 6 years, and this is the time of year I REALLY miss the cool weather of the fall. We went to the pumpkin patch and it was 80 degrees, but we still had a lot of fun. Finley was a riot - she loves every pumpkin and went around trying to pick them all up! She was really into it. Arlington couldn't decide on just one. She wanted to biggest pumpkin they had, of course, but in the end we talked her into a manageable sized one. Cainan wasn't sure what to make of the whole experience. I think he was feeling sick, so he wasn't really into it. But I am sure it looked a little scary to him. All of these big orange things that mommy and daddy want him to pose on. But he was a trooper and we got a few good pictures. The carving at home was fun as well. Arlington doesn't really like to scoop out the pumpkin with her hands, but we finally got her to touch it this year. She used a spoon for awhile, and then stuck her hands right in. Finley just wanted to eat it all. She kept trying to put it in her mouth. But she got the idea and helped us pick the seeds out after awhile and put them in a bowl. We roasted the seeds in the oven and ate some this evening - yum!! Another one of our favorites!
Finley also has a few new words. She is getting really good at repeating what we say now, so her words are coming faster these days. But she has learned to say "yes" and "nice". She pats Cainan all the time and says "nice". She is getting better with touching him nicely. He still winces a little when he sees her coming! Arlington is slowly learning to read. Now that she is getting the sounds of the letters down, she can sound out the words a little easier. We have taught her to spell, write and recognize (newest words) baby, yes, no, cat, dog just today! Our Arlington is a fast learner. Add that to the 10 or so words she can already write and spell, and I think she is getting the idea. We will have her reading in now time. Hard to believe it! I can still picture her at Finley's age.
Here are some pictures from today. I didn't take any before today because we have been busy, but there are a lot, I apologize! I hope you enjoy!
Update time! Here is what we are doing (besides sweating to death) here in Florida. It has been 90 degrees every day and humid. I am SOOOOOOO ready for it to cool off. I think we are supposed to have a slightly cooler weekend. I am over all this hot weather.
Sunday - Mat's mom and dad came down for a visit. They arrived at our house around 1pm with our niece. We were happy to see them. The babies had tuckered out early and were already in bed, but Arlington was waiting for them! Our niece had taken a nap in the car so she was ready to play! She and Arlington had a great time playing until the babies got up from their nap. This was the first time Mat's parents got to meet Cainan, so that was exciting! Their grandkids multiplied from 3 to 5 in the last 2 months!! And both the latest editions were boys. We need someone in the family to round out the numbers!! (and takers????) Anyway, we had a nice visit. The grandparents played with the kids, then we decided to brave dinner out with everyone. I am sure everyone who looked at us with these 4 kids under the age of 5 felt bad for us! Considering my niece is only 8 months older than the babies I am sure we looked insane to all onlookers! But the dinner went off without a hitch thanks to the fact we had four adults and lots of snacks! Everyone was well behaved and it was fun. By the time we got home it was times for baths and bed. All of the kids were tired and everyone went to bed without problems!
Monday - Mat's parents volunteered to stay home with all three little ones today and pick up Arlington at Pre-K at 11:30! Now, my in laws raised 5 kids (one set of twins even) so I knew they could do it. They had a really great day and everyone behaved very well. Arlington was the only one that didn't nap. Mat and I went to work and when we got home, dinner was waiting and all of the kids were fed. Ahhhhhhh..... My mother in law said being with all of them brought back a lot of memories! :) But the help was nice. They left to go back to Jacksonville to help my sister-in-law around 6:30pm and will stay with her until the weekend.
Tuesday - today Cainan got his thumb splints. He hated them at first, of course, but got used to them this evening. We got them this morning, but decided not to put them on for school today until I had a chance to mess with them. They seem a little big, but I think they made them as small as they could. He has the tiniest little hands! And his thumbs are really small, so they look very weird in these splints. The splints have a metal piece between the thumb and the rest of his fingers, so he can't bend his thumb in at all. He figured out how to pick things up with them tonight, so that is progress. We are to take them off for eating, but for the rest of the time, they should stay on. Even at night. He will wear them until at least January when we see he doctor again. As long as they do the trick, I am all for it! At least they are washable (unlike the helmet)! He looks like he has boxing gloves on. Too funny. Poor guy. But this is one more step in the right direction. And Arlington had an eye doctor appointment today. The eye doctor wanted to have her checked before she went to kindergarten, so we went today. Eyes were perfect. She was a really good girl. The appointment was long, but she was a trooper. The only thing she didn't like was getting her eyes dilated. It made everything blurry and that made her mad. She wanted to sit and do a puzzle and read a book and couldn't. But by this evening she was all better!
Arlington is feeling much better. Today was her last day of antibiotic. Let's hope the ear infection is gone for good this time. She still has a little bit of a head cold, bu not much. The worst part is - she passed the cold to Finley (of course) and to me. So Finley is sick again!!!! And I got it to. Whatever it is, must be strong because I don't get sick easy! 10 years of pediatric nursing and I have an immune system that is "strong like bull".
Here are some pictures from the last couple of days!
Well another week has come to a close and we have been busy as always! Here is what is going on with us
Wednesday - Arlington stayed home from school since she had a fever the day before. She ran a low fever first thing in the morning, but then was good the rest of the day. Mat was home with her since I was working and he could work from home.
Thursday - Arlington felt well, so she went to school. However, when she got home from school, she wasn't looking great again. At dinner she started to cry and said her throat and ears hurt. Luckily we have a very nice, urgent care that is never busy near by our house (that sees kids). This is where we took her the last time she complained about her ear (which was just two weeks ago). Mat took her and I stayed home with the babies and we took a walk after dinner. They were back within about 45 minutes. Her throat was red, but no infection. But she has a double ear infection. Ugh! Another one? That kid that is never sick! The pediatrician did say that around age 4 or 5 they get 8-10 infections, so I guess this isn't that unusual. So she is on an antibiotic Finley learned to say "moo" and it is funny when she does it. She is also saying a lot of words more clearly, and seems to be understanding more and more direction. She is also the ham of the family and always trying to get a laugh. Cainan is finally realizing he has lips. He has started licking them, and rubbing his tongue and hands against them, which is great! First step to getting him to stop drooling so much. The speech therapist wants him to lick his lips and play a lot of games of putting food on his lips and letting him lick it off to get him used to them being there, and keeping them closed together. He still breathes through his mouth and that is causing him to drool a lot more. Once step at a time.
Friday - No school for Arlington today. She was sick yesterday (and running a fever) so she was home with Mat again. She felt fine, but stayed pretty much on the couch or in her room playing. Poor kid - can't catch a break and Mat had to work from home two days this week. No fun for anyone. Both the babies went to school with no problems, although Finley came home sneezing. I forbid her to get a cold!!! (ha) Tonight I went out with a few of my girlfriends to dinner. We went to a yummy sushi restaurant and had a nice kid free evening. Although, we decided to sit outside at the restaurant, and it isn't under cover. We had an umbrella over our table, but it started to rain, then the wind started to blow the rain around, and we were chased inside. We were finished eating, but stuck inside the bar area where it was really loud! We stayed there about 1 hour, then couldn't stand it anymore, and decided to run for it. I know - where was our umbrella? Well, they call Florida the "sunshine state" - who needs an umbrella. We were soaked, but it was fun.
Saturday - Arlington woke up feeling great, so she went off to her scheduled playdate today. She played with her best little friend all afternoon. They went to the pumpkin patch and picked out pumpkins to decorate and had a blast all afternoon. I will take a picture of her with her pumpkin tomorrow and post it next week. She picked a pumpkins about as big as she is! But she had a good time. Mat went to work for the afternoon and I stayed here and cleaned the house while the babies took a nap. Once everyone was home and awake we had dinner and just played and finished cleaning up. We hung some pictures in Cainan's room as well. His room is getting close to being finished! A slow project now that he is here and we are so busy! I usually work on projects like that while the kids sleep, but can't while he is in there! Oh well. We are getting there. Finley learned to give kisses when asked. It is really cute! She is picking up stuff really quickly. Cainan has started saying "la la la" or something like it! He doesn't have a roof of the mouth, but he sticks his tongue between his teeth to make the sounds. We count it as a victory! Tomorrow Mat's mom and dad are coming in for a visit and will be here until Monday night! My sister in law Carrie and her baby so they are down helping her (she lives in Jacksonville Florida) and are coming to visit us for a day and bring our niece with them. So that is why we are cleaning! Ha! Yes we are proud aunt and uncle tonight of a healthy baby boy! We have a nephew! He is so cute and has a ton of black hair. He was 7 pounds, 11 ounces. They came home this morning. My niece is almost 2, so hopefully she will adjust to her new little brother. She will be a great big sister! We can't wait to hold that baby! Congratulations Carrie and Jonathan! We love you! Here are a few pictures
Okay - so now that not much is happening as often,I am going to update twice a week - hopefully on Tuesdays and Saturdays (for all of you faithful readers!)
Here is what has been happening Sunday -church. Went better this time! Cainan didn't cry and seemed to have a good time in Sunday school. We went out to lunch as a family. We haven't done that since before Cainan's surgery, but now that he is on a regular diet, we went out. We had a good time and everyone behaved themselves. It is kind of a circus getting two highchairs while we are out, but we manage. Luckily Arlington can entertain herself with crayons! And the babies are kept happy as long as they can keep snacking.
Monday - Finley had her blood drawn. Not fun. She had to be stuck twice - the first time they bruised her immediately and didn't get any blood. But the second one worked. She cried, but didn't move, which made it go faster. We had to wait 2 hours, though, to get her blood drawn. But Finley entertained all the people in the waiting room and was a really good girl while we waited. Arlington and Cainan went to school for half the day and I picked them up before lunch and brought them home. The rest of the day was uneventful!
Tuesday - Finley had her urine catheterization done this morning. Even less fun than the blood draw. She was really upset, but they got what they needed. And she was weighed and we were happy to report that she has gained 1 pound in about 2 weeks! Yeah! She is now up to 19 pounds, 9 ounces. Let's hope she stays well and stays that weight. We are to continue the fatty diet until we get her over 20 pounds and back on the chart! Hopefully all the blood and urine tests will come back normal and it was just a virus that was causing her weight loss. Poor baby - let's hope so. Cainan also had his helmet appointment today, so after Finley had her test, she went to school for the day with Arlington. Cainan and I had to go to Fort Lauderdale. These days I don't look forward to because it takes about 5 hours from start to finish. First, Ft. Lauderdale is about 1 1/2 hours away. Then we wait for about 1 1/2 hours before we are even seen, a half an hour for her to look at his helmet, shave it and adjust it, and then 1 1/2 hours back home. So from 12:30-5:30 was tied up for that. Isn't that crazy? We had to go every two weeks, but today got the good news that we can now go every 3 weeks! Yeah! We see her one more time on the 30th of this month (two weeks from now), and then not again until the 20th of November. Yahoo!!! That will help. Since he is older and he isn't growing as fast as young babies (who are the general people who get these helmets) she doesn't need to see him. BUT the even better news is that the helmet seems to be working. The helmet person saw some definite rounding in his head! We noticed it too. He is looking great! I also ran into Dr. Stelnicki (helmet place is part of his office) and asked him if we are to start massaging Cainan's scar. He said yes - three times a day. See, after the cleft surgery, once it is healed, we have to massage the scar area to get it to relax and to make it less noticable. We have noticed that the scar has been pulling his lip up in that area a little. He is starting to look like Elvis. Massaging the scar will help that. We have to apply hard pressure to the knot that is in it (feels like a little stone) to massage that out. We did it the first time tonight, and let me tell you - he screamed his head off!!! He doesn't really like to have his lip and nose touched - can you blame him? He was SO mad at us afterward - he wouldn't even look at us, and didn't want me to hold him. I feel so bad, but it has to be done. We also have to rub vitamin E on it. Ugh.
As for Cainan - he has been becoming more and more cuddly with us. It has been a break through the last couple of days. Before we would hold him, but after awhile, he just wanted down. Now, the last couple of days, he has been laying his head on our shoulder and hugging us when he is upset or just wants to be held. It is so nice, and will really help us bond with him. We are really pleased! And he is saying "hi" now. And babbling a lot more, and putting his hands in his mouth, and doing general baby things. It is nice to see.
Arlington is doing fine! Loved decorating a pumpking this week and can't wait to get the big one that we will carve. She is still deciding on what she wants to be for Halloween and has it narrowed down to Tinkerbell or Supergirl. She is sick right now. For a girl who hasn't been sick in a long time, she has had two colds in a row. I think she is just worn down. This is the first time she has gone to school 5 days a week, so she is adjusting. She is just tired and running a low fever. She is staying home from school tomorrow to rest.
Cainan came into our family. It has been two months since Gotcha day. Hard to believe! And what a two months it has been. He is a very different boy than the little guy Mat was handed on August 13th. Each day we see changes in him for the better. He is turning into quite the character!
Yesterday marked the one month mark until he has his palate surgery. This month is basically him getting used to school and a few appointments (mostly on Tuesdays) for his helmet and speech therapy. But other than that, a quiet month. It is nice to be in a little routine of school, work, and free time for a change. His first 8 weeks home were so fast and busy that we are glad for the "sort of" slow down. We know that all of this will soon be a distant memory and he will just be a little boy again.
His first school week went off without a hitch. Let's hope it continues. The only thing is that they take them outside twice during the day (which is great), but here in Florida it is still 90 degrees most days. He is sweating like crazy due to the helmet, and that he is just a sweaty kid! So his heat rash has returned. It is on the back of his knees, inside his elbows, belly, diaper area, and of course, his head. Benadryl seems to be knocking it back, and hopefully by the time he returns to school next week, it will be all but gone. He will adjust, and soon, we will be having cooler days. Plus, this is the first week he has worn his helmet for long stretches. In the beginning we were removing it every hour, then every two, etc. Now we should be leaving it on the full 23 hours, and he is having to adjust to that. It is not nearly as bad as it was the first time he got the helmet, but he does have some red heat rash areas on his head.
Finley is doing well. Has been a good eater this last week, and seems to have escaped this week's worth of school without a cold! Let's knock on wood just in case! Her vocabulary grows every day. She continues to impress us with her language skills. She says about 20 words now, and tries to mimic everything we say, and has her own babble that she thinks we understand. She is still picking on Cainan, though. Mat caught them tonight - Cainan just sitting in the playroom, and Finley standing over him hitting him in the head with a baby doll. He wasn't crying, just sitting there. I think the helmet was taking the brunt of it. She is too weird. It is unpredictable. She will just reach over and bop him in the head from time to time. He never fights back. If he did, I think she would quit. She isn't overly aggressive - just decides he needs a good whack now and then.
Arlington remains the ever great big sister. She spends most of her days getting the babies to play with her and doing art project after art project. That girl loves to draw and color. And she loves to just make things. She can sit for hours just working at the table with different art supplies. It is neat to see her little mind work! She also loves to pull the babies in the wagon on our evening walks. She loves to hear them giggle when she runs with them in tow! I don't know what I would do without her most days. She is part of the "team" when it comes to chasing the little ones.
Work finished well for me this week, and I am still happy I went back! It was a busy week! I ended up working 30 hours in those three days, and I was tired by last night. I have a busy month ahead with work, but it will be good for me for awhile. I am going to be taking some time off again for Cainan's next surgery, so the extra work this month will be good. The kids I care for have gotten so big in the 6 weeks I was gone! They all look huge to me. It was fun to see them again. I work in the toddler room at my center - isn't that funny? I don't really ever get to escape the age at work or at home! But I love it.
Here are some pictures from the last couple of days. Enjoy!
