Saturday, May 31, 2008
Friday, May 30, 2008
By late afternoon, she always comes to me with her sad face on saying "I forgot to blow out my candles today". It's quite pitiful. I usually laugh (because it is also quite cute) and tell her that she can blow her candles out on her birthday. Satisfied with that answer, she gleefully hobbles along to the next self-centered activity...usually dancing around the livingroom like Cinderella and asking me to tell her over and over again she she is "the most beautiful princess in the world".
Someday I am going to make her a cake with candles on it just because...that should throughly confuse her.
PS...Grandparents, Great-Grandparents and the like: I ordered pictures of all three kiddos for ya yesterday. You should receive them in the next couple of weeks.
PPS...I may be scarce next week. We will have friends and family staying with us for the next 8 days (not all at the same time though), and we can't wait to see everyone! I'll try to update when I can.
Wednesday, May 28, 2008
The laundry got done...sort of, kind of, not totally finished yet. But at least we don't have to wear the pants with the broken zipper at the bottom of the drawer and the shirt with the sharpie marker mark across the chest for another day. Laundry is one of the many unending tasks we mothers deal with each day...when you get everything washed, folded and put away, it is time to tackle the next mount of pee-pee pants and clothes that suffered the last blow-out diaper. And people wonder why I let my kids run around half-naked a lot of the time.
Nathan rolled over for the first time in a month when some friends were over yesterday. It happened so fast and we chalked it up to "I don't think he meant to do that". He did it again yesterday evening. And three times in the middle of the night (I'm letting him sleep on his stomach again)...and three times today. He's rolling over again. I have been so excited to share this news with everyone I have talked on the phone with today...he's getting stronger. He's using his muscles. He's rolling over again!In fact, he is doing a lot of new things now. He's laughing...the poor child is extremely ticklish, so I make a point to tickle him over and over until I hear the deep chuckle that makes my heart swell. He is playing with toys now...grabbing them from his play thingy that he lays under (whatever that play thingy is called) and sometimes trying to put them in his mouth. We went swimming today and he thoroughly enjoyed kicking his legs and gliding through the water for a half an hour. He is eating a full 4 ounces for most feedings now and gaining a third chin and some more rolls on his thighs that are ripe for squeezing. I love it.But the best "new" task that my little man has mastered is the art of sucking his thumb. Genetics are a funny thing, it seems. Nate is our third thumbsucker...all three kiddos suck their left thumbs. Abby is currently trying desperately to kick the habit but keeps falling off the wagon when nighttime comes around. I secretly love that they suck their thumbs...I have a special place in my heart for thumbsuckers. So maybe it isn't genetics at all...nurture?Nathan is still having a couple of "grey" episodes a day, but they aren't happening nearly as often as they were last week. And he was able to sit in his bumbo again today without struggling to breathe. I don't know what any of this means, but gosh, we are so hopeful! It is amazing to see the daily improvement in him. God clearly has his hand on Nathan right now. He is hearing our prayers. Does this mean he doesn't have SMA? I don't know. Maybe he doesn't. I pray with everything in me that he doesn't. Or maybe God is strengthening him for this battle. Which ever it is, it is simply amazing to see the work our Lord is doing in our son. I stand in awe each day...
Tuesday, May 27, 2008
Okay, I'm a few days late, but happy 3 months sweetheart! You were experiencing your very first "annual meeting" at church on Saturday when you turned 3 months, and it was a wonderful meeting. You did well all weekend. You grew a little tired and fussy each evening, but you were in great spirits for most all of the services.Since I have made the quintessential motherly mistake of failing to keep your baby book updated, I usually use these monthly letters to you to describe the events that have occurred during the previous month. This month was a tough one, Nate. And my prayer is that instead of writing about it here, I am able to tell you about it one day when you will grasp and understand the magnitude this month has been on your life and the lives of those around you. I hope to tell you that the doctors were wrong. I'll tell you about the hundreds of people (many of whom we don't even know) who are lifting your name up in prayer. I'll tell you about the grace that God has given us during circumstances that we never imagined we would have to face. And how amidst the grim diagnosis that you were given, you started to gain strength and milestones that you had previously lost.My prayer is that the Lord will allow me to tell you these things when you are older, my son. So I will save the rest of my words for then.
Monday, May 26, 2008
Nate had the Oxygen study done last Friday and did very well. He dipped down pretty low a few times, but those were mostly accredited to the fact that he has a very active flex on the foot that the 02 sensor was taped, thus giving a wrong reading. For the most part, he stayed in the 90's, so he does not require any oxygen for now. If his grey episodes turn bluish-purple or if they last longer than the few seconds they are currently lasting, then we will re-evaluate. I think he is fine. He is continuing to grow stronger each day, and we are continuing to do his strength and breathing exercises. This week is the first week in ages that is free of any doctor or therapy appointments. Oh, that is such a great feeling!
Nathan's new bottle has made a huge difference in his eating habits. In just a few short days, he went from eating 1.5-2 ounces each feeding to eating 3-4 ounces. He is also going longer between feedings, and he slept from 7:30pm-3:00am last night without waking. That was a huge step for him! We are truly thankful for the progress he has shown lately.
I absolutely love having our annual meeting on Memorial Day weekend because that always gives us Monday to rest and relax from the busy weekend. This is what our Memorial Day looked like: Emma displaying her perpetual wedgie...poor gal takes after her mama in the bodunkadunk region.I think we wore out little Nafey. I have never had a kid fall asleep while I was washing their hair...this cracked me up so much. Poor little guy was tuckered out, for sure.
Wednesday, May 21, 2008
Abby. Well actually, it is Abigail...but usually only when she is in trouble. Ummmm, I take that back. Emma consistently calls her "Abby-gail" in the cutest little southern accent that she can muster. Abby's our first born. The quintessential "oldest child" who loves to pester her sister, loves to be bossy, and loves to be in control of any situation. She routinely hears "Are you tattling?", to which she often replies, "No, I'm just telling the truth." Abby also has one of the sweetest and most loving hearts of anyone I have ever known.
Miss Abby is the ripe ole' age of 4 years. She's our little monkey who is constantly having to be reminded that we do not jump on the furniture...though she can obviously climb any doorway she sees fit. Yeah, I don't see the reasoning in that either. She started going across monkey bars by herself when she was 3. And she is on the constant prowl for the best climbing tree to tackle. She's a daddy's girl to the fullest and can often be seen halfway under cars helping change the oil or with hedge clippers in hand to help with the yard.She learned how to play Uno a couple of days ago, which doesn't really seem to be that big of a deal except for the fact that "Oh my gosh, she is playing uno! She's grown!! When did this happen?" Abby also recently learned that picking scabs is oh, so fun. I threatened to put some medicine on her boo-boos if she didn't stop scratching off the scabs, so she started hitting them when they itched instead of scratching them. In theory, that's great, but now she randomly hits herself over and over again as we walk around in public.Emma. My little Emmabear. She is often referred to as "You little stinker!" She's 2...and very 2 right now. She's our fit-thrower, our complainer, our child who has made us cringe at the thoughts of our previous declarations that we would never have a whiny child. Yeah, don't you ever dare to say that. But she is also the funniest, cutest little cuddle bug ever. I just love hearing, "Mama, I wanna cuddle with you." Wherever you see Emma, Bear-Bear is close by. Bear-Bear is the very loved and very stinky companion that has rarely left her side since she was about 6 months old.Emma was the baby who put everything in her mouth...she hasn't out-grown that at all. She will examine an item over and over again but won't put it down until she has tasted it. Strange, I tell ya. I have to reprimand her daily about trying to feed Nathan goldfish crackers.
Emma received a big ole' hair cut tonight. It seems that when I get tired of the girls' hair soaking up half of the milk from their cereal each morning, I get a little scissor happy. I love this new look on Em, who clearly still insists on wearing winter pajamas at night when it is 80 degrees outside.
Nate...Oh, Nafey. My little man of many expressions. Nathan will be 3 months old on Saturday. He's still a red-head, and his eyebrows are even coming in with a red tint to them. I love it. He's an easy-going little dude who loves being around anyone who will pay him attention. He is quick to smile and quick to win over anyone who looks in his direction.
Nathan gained quite a bit of strength for the first time in a while last week. He started pushing himself up on his forearms again, batting at toys, and being able to keep his head steady for longer periods of time. But while he seemed to be strengthening in some areas, his breathing seemed to be getting more labored. He started turning grey around his eyes and mouth. He would pink up pretty easily afterwards, so we weren't too terribly worried.Our physical therapist also saw these "grey" episodes and checked his O2 sats...they were about 93-95 during these times. That's a decline from previous checks of his sats, but it still isn't horrible. She decided to put a call into Nate's pulmonologist. About 24 hours and 400 phone calls later, Nathan is set up for a pulmonary function test tomorrow morning at the hospital (we'll just be there for a few hours). They are going to decide if he needs a little bit of oxygen support at home. I'm hoping he was just having a rough week and he perks up fine (he hasn't had a grey episode all morning), but we'll figure out the next step after Friday's visit.Besides that, he's doing great. We're trying out a new crazy looking bottle for him to see if we can get him to eat a bit more, and he has adjusted so well to that. He ate 4 whole ounces for the first time ever this morning! Nathan has such a sweet disposition. I love that about him. And he tolerates his sisters' antics quite nicely...you've gotta be laid back to do that. He's our little Nateman.
Tuesday, May 20, 2008
Monday, May 19, 2008
I received a call this morning from the financial coordinator at the pediatric therapy place here. Our insurance doesn't cover Nathan's upcoming occupational therapy appointments. And they are expensive. Really expensive.
She told me the cost of everything and asked what I wanted to do.
If Nathan does indeed have SMA, he will more than likely have to have a feeding tube inserted pretty soon. His current feeding difficulties will make that time sooner rather than later. I told the lady to cancel his OT appointments and we will re-evaluate everything when we get the genetic testing back.
I hung up the phone and just cried. We had hit our first road block. And it was tough. "Lord, see us through this" was my quick prayer as I regained my composure and then opened the door to the room where I needed to finish my conversation with the girls as to why taking things away from each other and screaming at each other aren't acceptable.
About half an hour later, the phone rang again. It was the financial coordinator at the therapy place again. She told me that Nathan really needed this occupational therapy to help prolong us having to get a feeding tube for him. They decided to do Nathan's evaluation visit (the most expensive) for free and then give us a very discounted price for any subsequent visits he may need.
I hung up and just cried all over again...not from being overwhelmed or heart broken or upset. These were tears of joy and happiness. And thankfulness.This weekend was wonderful. For two days, we were surrounded with church family who we love so much. It is always a joy to be around them all, but this weekend was exactly what we needed. We felt their love and prayers, and it was just so uplifting. This upcoming weekend is our annual meeting at church, and I am so excited to be around those who we love so dear for an extended portion of time.
Thursday, May 15, 2008
Nathan was taking a nap and I put a good show on for the girls, and I hopped in the shower. I have recently realized that a shower can serve more purposes than just washing away the filth and stench that these hot days give a body...it is a place where I can cry as hard as I need and pour my heart out to God without interruptions. And that is just what I did. One of my best friends made her daily call right after I hopped out of the shower, and instead of both of us crying on the phone, somehow we got on a topic that is not suitable to be blogged about and we laughed and laughed. We laughed until our cheeks hurt. Oh, how it was good to laugh!
A little later, I felt a peace about me that I haven't felt since we were at Sea World. It is the first time I have felt that comfort here at home. The Lord had intervened. He is so merciful.
I'm going to wait a few more days before I read the stories of the children that had SMA again. I know that those stories have invaluable information to us, but it may just be a little too soon.
I am constantly amazed at how the Lord has dropped people in our lives through this difficult journey over the past few months. Some of those who were reading this when I was pregnant may remember the woman I ran into at the park who had the little boy with Down Syndrome. I had never seen that woman before and haven't seen her since that encounter, but visiting with her for just those few short minutes brought comfort to me for a long time. I have thought of her and her son often. This happened quite a few times when I was pregnant with Nathan. God used people that we didn't know to comfort us. Nathan had another ultrasound of his kidneys this morning. Before the appt, I found a "tucked away" little waiting room so I could nurse Nate. There was an older woman sitting there, but I didn't think that she would mind me nursing him. She was there alone.
We talked some about how different things are raising children now versus when she raised her children. When Nathan finished nursing, my little social butterfly stole the show. He smiled and cooed at me and was just so happy. She said, "Surely he isn't here because of problems??" I told her about his kidneys and that he has had numerous health problems since even before he was born. I didn't tell her about the obstacles we are currently facing.
She looked away for a moment and then looked back at me with tears starting to collect on her cheeks. "I lost my first born son when he was 7 months old. He died of SIDS. It has been 47 years, and I still think about him everyday."
I said I was so sorry but then looked away for fear of losing it emotionally. We remained silent for a few minutes, and then she started talking about her two living sons, and I talked some about the girls. And Nathan kept on smiling through all of it. I was able to hold it together until I got back in the van to head home. And all the way home, I thanked my Lord for putting yet another person in our lives for just a few minutes to give us the comfort we needed. That woman had no idea that we may lose Nathan. God sent her to me. He showed me that there are mothers everywhere that have lost children. And if we do eventually have to say goodbye to our son, it will be so hard, but we will be okay after a while. We'll think about him everyday for the rest of our lives...we may still shed tears after 47 years, but we will essentially be okay.
I am thankful for the woman I met this morning.Your support over the past few days has been so helpful. I simply can't reply to most of the emails I have received...I apologize. The support within the SMA community has been incredible! I have never contacted them but have received numerous emails from parents with children with this disease. Yesterday, we received an over-nighted box from the organization "Families of SMA" with lots of information about SMA along with a sheep-skin blanket for Nathan. And as I was typing this entry, another knock came to our door. It was a huge box of toys and an outdoor swing that reclines for Nathan from a family that had a daughter with this disease. The support has been amazing. Thank you. I took this picture a couple of weeks ago...I treasure it even more now.
Oh, almost forgot about his kidneys. Well, they still have fluid on them. I don't know what the next step for that is, but I'm not worried about it.
Tuesday, May 13, 2008
Today's therapy session was rough. We met our new therapist today, and I am so pleased to say that she is so great. Andrea (our old therapist) was so wonderful and I dreaded having to switch therapists, but Maria is so sweet and seems to be just as wonderful as Andrea. As Maria evaluated Nathan, some additional problems jumped out at her. He can bear weight on his legs right now, but the muscles in his calves are way too tight. She said that she sees this a lot in little boys with muscle disease, and she showed me some exercises to help loosen those muscles up.He also keeps his hands clenched a lot of the time. When babies start pushing themselves up, their hands automatically release from the "clenched" appearance. The problem is that Nate is not pushing himself up and may never be able to, so we have to train his brain with different hand exercises to relax his fingers. Hopefully this will help him be able to grasp certain objects and be able to use his fingers.
But the hardest thing today was the realization that I am probably going to have to stop nursing him soon. I knew that it was a very real possibility that I would have to stop, but I didn't know that it would be this soon. And I didn't expect that realization to be this hard to bare. I can't help but think that this is the first step of preparing for separation between my precious son and myself.
Mu gut feeling for the past month that his feeding cycle isn't normal was apparently right. Maria asked about his feeding, and I told her that he seems to take in a lot of air when nursing...like he can't keep latched on for long. This would be the reason he has always been so gassy. She asked how much and how often he ate (the neurologist asked this last week also and just kind of grimaced when I told him), and I told her every 2 hours and about 2-2.5 ounces whenever we fed him a bottle every once in a while. In all actuality, he has been needing to eat every hour to hour and a half for a few days now.
My thoughts of late were true...he gets tired before he gets full. That would be the reason he eats so often. And milk coming from the breast is a lot slower than a fast flow nipple from a bottle that we are probably going to have to use. Maria said that she was going to immediately contact our pediatrician for a referral to begin Occupational Therapy to work on his feeding problems. And I am going to enjoy every single nursing session the little guy and I have together until it is indeed time to stop.
I was having a rough emotional day before Nate's PT, so I prayed that the Lord would give me strength through the session. He graciously did just that. But I surely was glad that Jay was home with the girls so he could hold me in his arms as soon as I got home. Gosh, I love that man.
I talked with our pediatrician on the phone yesterday. It was difficult to hear the sadness in her voice, but it was wonderful to be able to talk with each other about the peace and comfort that can only come from our Heavenly Father in these difficult times. I was telling Jay last night how much God has blessed us with faithful doctors through this journey and how helpful that has been. A few minutes later, Andrea, Nathan's first physical therapist called.
I told Andrea about the visit with the neurologist, and after talking for a few minutes, she did something that I will never ever forget. She said, "Amber, can I pray with you here?" And she uttered a sweet, heartfelt prayer that brought tears to both of our eyes. Oh, how thankful we are for the people taking care of our son here.
Our pastor, Brother David Crawford came over for a visit last night. It was wonderful. It was hard at moments, but it was a sweet time with him. The girls were so excited he was here. Abby has been attached to his hip for the past few weeks each time we are around them, and she spent all day collecting different leaves and flower petals to give him last night. The other day she said, "Mom, I can't wait for winter time because then Brother David and I can share a hot chocolate together." I then asked her if she had a crush on Brother David and she blushed and gave a sheepish grin and said, "Yeah. I just love him." It makes me chuckle every time I remember her saying that.
Nathan is a hit with the ladies at the front desk at the therapy place. They asked to hold him today while I had to sign some paperwork, and they just kept laughing at him flirting with all of them. Like I've said before, he has a smile that will melt the stoniest of hearts. As I was paying for the visit before we left, one of the ladies got really close to me and whispered, "I think he is the cutest little baby that comes here." I beamed with pride and agreed whole-heartedly.
Sunday, May 11, 2008
Thursday, May 8, 2008
Nathan's neurologist took about 3 minutes of observation before he was pretty confident in what he has. He thinks that Nathan has Spinal Muscular Atrophy (SMA). All of his symptoms point to it...the biggest being his retracting and hypotonia in his trunk area (shoulders, upper arms, chest and back). He also has little or no reflexes in his deep tendons. SMA is a genetic degenerative nerve disorder, and there is no cure. It is fatal...usually within a couple of years when diagnosed this early. It physically hurts me to write that.
I pray that the genetic tests disprove the Neurologist's preliminary diagnosis. But if that is not the Lord's will, I pray that we will be given strength...and I still pray with everything in me that Nathan be healed.
Wednesday, May 7, 2008
The goatee'-esce appearance would be from him trying to shovel his fist into his pudding hole in an attempt to figure out where this velvety chocolate concoction had been all his life...all 2-1/2 months of it, anyway. Don't let the amount around his mouth fool you...he didn't get much.
The red eyes...well, that's the precursor to a nap.
There have been so many people who have helped us over the past few months by watching the girls so I don't have to lug them to the many doctor appointments Nathan has had, but I have to give a special shout out to Tara and Jolee who have made the hour+ trip down here about once every other week to play and babysit for a little while. Tara and I have become incredibly close over the past few months, and her friendship means so much to me.
I had a morning full of doctor appointments on Tuesday and Jay was out of town, so Tara and Jolee came down to spend the night so she could keep the girls for me starting bright and early the next day. We took this opportunity to take Jolee's 2 year old pictures. It was the perfect evening, and Miss Jolee was so sweet. She especially enjoyed looking at the "pish" in the nearby lake...I just love this age when they start talking up a storm. The next day as they were leaving, Jolee gave a big hug and said "Bye. I love you!" and it melted my heart like it does when my own kids say it. Thanks for being here for us, guys!
Tuesday, May 6, 2008
I opened the door all gruff and abrupt-like to see Abby counting Emma's toes and tickling her each time she reached her littlest piggy toe. And then Emma told me that her tummy hurt because they were pretending to eat tree houses, whatever that means. And Abby sang me the new song that she and Emma made up. And they were just being so stinkin' adorable that I decided to get me some extra kisses and tell them to be a little quieter so they don't wake up their brother. It may be a whiny day tomorrow, but it is worth hearing those giggles a little bit longer.
We found out today that Nathan is being switched to a different physical therapist. Our therapist is going to be able to stay at home with her little son who is to be born in a couple of months, so a new therapist is coming to take over all of her patients...except Nathan. He is being transferred to a different therapist there who has worked with kids with breathing problems and is very familiar with the taping methods and exercises needed for their improvement. In fact, she is the one who showed me and our previous therapist how to correctly perform the daily exercises we do on Nate.
I absolutely hate that we are having to switch...I LOVE our current therapist. But I am indeed happy that she is able to stay at home with her new little one. Since we are being switched, we had to wait for an opening in Maria's schedule (the new therapist), and the new time is Tuesdays at 10:45, which is such a stinky time compared to the great 8:15 we have had for the past month. We've been scratching our heads regarding what we are going to do with the girls during this time, but we have wonderful friends who have offered to help. The Lord always provides...even through the normal kinks of life, he provides.
Nathan's neuro appointment is Thursday morning. Please keep him in your prayers. I pray that the neurologist's eyes will be opened to be able to decipher what is causing Nathan's breathing issues, but I also pray that we won't be discouraged if we hit another road block in this diagnostic process. This week is extremely busy, so I'll try to update when I can.