Christmas Blessings

We have just enjoyed our third Christmas with our beautiful daughter. She is now two years old! Something that we thought we'd never see! We have so much to be thankful for, and to have spent another wonderful Christmas with her....well we hope we can enjoy a few more just like this one! The kids all had a wonderful Christmas thanks to all the special things that were done for us this Holiday Season!! We very much appreciate all the help we had to make this such a wonderful Christmas!

We had Secret Santa drop off two large gift bags full of toys for the kids. This definitely rounded out their Christmas "loot". I never feel that our children are lacking in material things, but having lots to play with when you are housebound sure does help. It keeps MaMa from pulling her hair out when they have lots of variety!

Kaitlyn had a box of goodies arrive from Kyle and Friends (http://www.kyleandfriends.org/). She got a new Microlight Switch and computer interface, a new bi-pap (ventilator) mask, and a bunch of toys! She has been REALLY enjoying the computer interface and microlight switch. Now she can play games on the computer! This is going to open up her world and help her have more independence and make some choices for herself for a change! People sometimes get confused that because our SMA children can't get up and walk and do the "Normal" sorts of things that children do that they must therefore not be right or somehow mentally impaired!! The exact opposite is true! Our children are extremely bright and often are labelled with above average intelligence! I know our little girl, even though non-verbal for the most part, has absolutely no difficulty getting her point across EXACTLY what she wants, how she wants it and when she wants it!!!!! And get it right please!!

Then when we thought our Christmas was over and good times had by all, we received a Christmas card yesterday from the South Range Christian Church with a gift for Kaitlyn!! It's hard to believe how one baby girl can touch the lives of so many perfect strangers. We have only just found out that Kaitlyn has been on their prayer list for awhile now, and we had no idea so many wonderful people were rooting for our special little girl. She has been beating the odds, living past her life expectancy, thriving, and living and loving life. If these people could meet our little one, they would see a baby full of life and hope, and teaching all those around her how to love and how to have hope. We strive every day not to extend the life of our daughter and selfishly keep her here with us (although we want this as well) but rather we work so hard to improve the QUALITY of Kaitlyn's life. I don't think that people realize that every kindness, big or small, has an impact on the quality of life we can provide for our daughter and that this is what we are so thankful for every day. It's what keeps us going. So even though it is not enough, we say Thank You to the South Range Christian Church.

I finally got a new camera for Christmas. My husband kept saying there was nothing wrong with the old one, and then it finally went completely caput! It served us well, we got it when we were married five years ago and took over three thousand photos. My new camera is very nice so the pictures and video will continue...yeah!

ER Visit

We had to take our oldest boy Owen in to the ER last night. He's had a cold and been running a fever for three days now, today will be the fourth, but has otherwise been fine. We thought that he just had a cold, although the fever not going away after the first day did concern me a bit. Well last night we put him to bed but he just couldn't settle. He got up around 10:00pm and was pretty upset. He had more fever, even though he had Tylenol just before bed, his left eye was a little swollen and red, and he said his ear felt funny. Tim and I decided to take him in to ER and find out what was wrong, we always get concerned when the kids have complaints outside of the ordinary cold. They got back around midnight. Owen came in toting a stuffed "Shining Star" monkey, and a purple mouth! Daddy came in with a prescription for antibiotics for Owen and Kaitlyn! Owen has an ear infection, pink eye, and a cold! Poor little guy. So far he is the only one sick. We filled a prescription for Kaitlyn, just in case she shows any signs of infection over the next couple of days. When Kaitlyn gets an ear infection it causes increased secretions, pain, and if she aspirates secretions there is always the risk that she could have a pseudomonas flare-up or other bacterial infection. If we don't treat her soon enough she could get pretty sick really fast!

All is well today. Owen is feeling better this morning, these things are always worse at night! Hopefully he'll have a better night tonight. He's pretty excited about Santa coming tomorrow, but concerned about how Santa will get into our apartment because we don't have a chimney! Owen can't wrap his head around the whole "He's Magic" angle! Kaitlyn is happy watching Dora today and when you ask her who's coming tonight she says "HO HO HO"! I don't know how she knows, she hasn't been coached, she just doesn't miss much. Alexander and Kaitlyn are both fine, so far no cold symptoms (or any other symptoms either!).


Kaitlyn enjoying her new Microlight Switch! She just loves it! It's hard to see in the picture but she was playing with her glow worm. It lights up and plays music for her!



Owen acting silly with the Christmas Stockings. He's such a clown. He put them on all by himself. The picture is blurry because he wouldn't hold still, so I had to snap it fast!



Look at all the clutter in my house!! At least the floors are shiny underneath all the toys scattered everywhere!!!

Christmas Party

Owen had his school Christmas Party this past Friday. The families were all invited to attend. Tim and I decided right away(of course) not to take Kaitlyn. We are on lock down this time of year. We avoid all crowded places, especially young children, until spring is here. This may sound harsh, but when you have a child with SMA you have to avoid as many bugs as you can or spend a lot of time in the hospital.

Tim took Owen and Alexander to the party. The boys had a blast! They made Christmas reindeer hats and ate ice cream (with sprinkles!) and crackers with cheese. Tim said Alexander spent the morning in the bathroom washing his hands and tasting crackers and putting them back on the plate!! Yup that's my boy! Then Tim's talking to one of the other parents and he says that Jake's brother was home sick all week and was just getting better!!!!!!!! Jake goes to school with Owen, and Jake's brother was at the party! I just don't understand how to make these people realize what this means for us. It sure gives a whole new meaning to homeschooling!

Today Owen was acting funny. Clingy, whiny, and obnoxious! I asked Tim to check his temp. 38.3 (101). He was warm all day and went to bed with a fever. He says nothing hurts, but he's four and was whiny about something, so either he just feels like crap all over, or he can't understand how to explain what he is feeling. Tomorrow is a new day, and we shall see how he is when he wakes up! I really hope it's nothing much, we don't need illness heading into Christmas day!!

Special People

There are some truly special people in this world! We have had two very kind acts done for us this week and I'd like to tell everyone about it.

The first act of kindness came from a lady who only knows us via the internet and the SMA community. Her name is Jana Gundy. Jana has a boy with SMA(four years old!) who is also Type 1. She has a non-profit Organization called Kyle and Friends which is founded to support families with SMA children. She asked me awhile back if I would mind if she sent Kaitlyn a few things funded by Kyle and Friends. Well the package arrived this week and contained a micro switch, a switch interface for the computer, a ventilator mask, and three switch adapted toys. To us this was a huge help. Kaitlyn now has a switch that is appropriate for her condition and can now work all of her toys! I thought that she was just bored with them...but it turns out that she just couldn't operate the old switch we had!! Now if I can just figure out the switch interface for the computer then Kaitlyn can start playing computer games. This is really going to open up her world a bit! Thank You Jana and Kyle and Friends!

The second act of kindness was from an anonymous person. A "Secret Santa" if you will. I discovered slid under our door yesterday an envelope. On it was written "Kim Hatchard & Family....Merry Christmas!". There was a post-it note on top which read "open the door". (We live in an apartment building). I opened the door and in fell two large gift bags full of toys. Of course the bag with the boy's stuff fell through and made a bunch of noise (talking toys). Owen says what's that and immediately grabs the toy making the noise and another next to it and hands the second toy to his little brother. Off they went to play with their new toys(one each). I gathered the rest of the stuff and put it out of sight until I could figure out what it was!

I looked at the envelope again and couldn't figure out the writing. I opened it and the card inside reads:

"Kim, I don't know you very well, but enough that I know what an incredible mother you are, and so smart and selfless. I hope you know that you are an inspiration to so many young mothers out there with sick kids or with healthy kids. I hope you have a wonderful Christmas with your beautiful family!"

"I know it is very difficult for you to get out of the house, so please accept these gifts for your children and give them from "Santa". I hope this makes life just a little easier."

Signed: "LV: Secret Santa"

I haven't a clue who the Secret Santa could be. It was a very generous thing for someone to have done! There are several toys in each bag, one for the boys and a big one for Kaitlyn! Kaitlyn's bag is filled to the top with DORA and nothing else! The boys got Diego, Disney, star wars, cars character to mention a few!! Unbelievable! Somebody put a lot of thought and time (not to mention money!) into these gifts. Such a selfless act deserves a thank you, but I haven`t a clue who to thank. Hopefully something very wonderful will happen to this person this holiday season! Thank You Secret Santa!

Haemotology

Kaitlyn's haematology appointment went really well today! It would seem that we got some miss information, or misunderstood(although both Tim and I got the same message), the last time we had ultrasounds done of Kaitlyn's clots. The haematologist said that her clots appear to have resolved! We can stop the Enoxaparin injections! One more bad thing she doesn't have to suffer through everyday.

The haematologist says that he believes that Kaitlyn may be genetically prone to clotting as blood clots are diagnosed in both my family and Tim's. He said that he felt this before he knew the family history! He said that typically a child, even one prone to clotting, wouldn't necessarily be treated continuously for clots. He is inclined not to treat her as sometimes more issues are had with blood being to thin than that she would just randomly clot. Typically a clot occurs because of something foreign being introduced to a vein (central line) or a period of being bedridden (not moving about at all) or surgery, especially orthopedic surgery. The genetic testing for clotting factors involves some extensive bloodwork, and being that Kaitlyn is not an easy poke and has been through so much we have opted not to put her through this if it won't change how we are to treat her.

We have been told warning signs and what to be aware of in case she forms future clots. Kaitlyn will also have to be treated with a course of enoxaparin every time she has any procedure done that may predispose her to clots!

Kaitlyn still has some thicker secretions from time to time. She has gagged a few times over the last three days, and then I suction tons of stuff out her nose. Mostly after physio in postural drainage or a saline neb. We have not upped her treatments as she is moving the thick stuff out, and her lungs are crystal clear. Her sats have not been affected so far, except momentarily. Hopefully she will get over whatever this is pretty fast!

More appointments!

Kaitlyn is doing about the same. She still has cold symptoms. Tim thinks that Kaitlyn's symptoms are environmental as the temperature has been up and down the last few days. She has an increase in secretions and lots of junk coming from the nose. The saline nebs in the morning are really helping to get out this thicker junk. So far she hasn't had a fever; borderline, but not a real fever.

Tomorrow we have another appointment in diagnostic imaging (ultrasound) to have Kaitlyn's legs scanned. Kaitlyn has blood clots in both legs from past central lines in the femoral veins. Her clots are both arterial and veinous. She has been on Enoxaparin injections twice a day since early August. We would really like to be able to stop these injections as they are painful. We had scans done a month ago and the clots were still there and had even gotten worse! We upped her dose of Enoxaparin last month and tomorrow we will see if that has made any noticeable difference.

We also have an appointment with Kaitlyn's haematologist tomorrow. We have never had an outpatient appointment before and Tim has never met him. It will be interesting to see what he has to say. I would like to have an educated discussion with him tomorrow, but unfortunately Kaitlyn is the only SMA sufferer I know of to have clots. There also isn't a lot of online info. on clots in pediatrics, and what I have found I have read. Not much help there!

In my last post I mentioned RSV and how horrible this disease is for SMA children. Well a little girl with SMA Type 1 in Victoria, BC is currently in hospital with RSV! Our thoughts and well wishes are with this family. We are hoping she can avoid intubation and be back home with her family for the holidays!

Kaitlyn enjoying french fries! Just don't take it away!!! Major MELTDOWN!

Kaitlyn Talking

Sling Play

Nursing and Appointments

I know I haven't written in a few days, but I haven't had time. We've had three new nurses sent in so far, and each one on a different day. Our regular nurse only came on Tuesday and Thursday afternoons for a couple of hours each, and the afternoon visits are not nearly so rigorous as the morning schedule. So, I have had to train the "old" nurse on morning care while she is trying to train the new nurses what she does know how to do. It's been a bit confusing, a bit hectic and more than a little annoying. I wish that they had just sent the regular nurse in until she had the morning routine down, and then introduced new faces one at a time. The VON nurse management think that the nurses can learn how to care for Kaitlyn in one visit. They just have no idea what is involved with taking care of her! The only ones that would understand how involved the care of an SMA Type 1 child is, are other parents/primary caregivers of Type 1 children.

We had our first RSV shots on Tuesday. (I say shots because they calculate the dosage based on weight divide that by two and give her a needle in each leg). Kaitlyn will go once a month now for RSV shots until April. RSV or Respiratory Syncytial Virus causes respiratory tract infections in people of all ages. Natural infection with RSV does not produce protective immunity, and therefore people can be infected multiple times. For most people RSV produces mild symptoms often indistinguishable from the common cold. But for our weak SMA 1 children RSV causes bronchiolitis and pneumonia, leading to severe respiratory distress requiring hospitalisation, usually intubation and even death.

My heart goes out to the families whose miracle children have been denied RSV injections for this season. Their insurance companies say that their children are too old to benefit from the vaccine! Our clinic has dealt with children up to the age of five(a trached child). I am hoping this means Kaitlyn has a few more years of coverage before she is also denied! It's a slap in the face to work so hard to keep your child healthy and happy every day, just to be denied access to something that could help save their lives!

We also saw PT for ankle foot orthosis and knee bracing. PT called back later that day and said that the rehab center was looking at the casting after we left and have decided that any bracing they could make would not help improve Kaitlyn's contractures. Her ankles are quite contracted and her feet are beginning to turn up. They have suggested that we try either serial casting, which they don't seem to have a lot of confidence in, or tendon release surgery. My problem with the surgery is that it seems like there would be some lasting weakness and perhaps more long term pain? There isn't a lot of information on either of these procedures on the internet(at least not that I can find). If anyone has any info. on either of these procedures please feel free to e-mail me, as we would love to hear your experiences.

We are home battling another cold this week. Seems like everyone is ill right now. This has been an awful season for colds. It doesn't seem to matter what we do for germ control...the colds keep making their way in! Keep fighting the germies we want everyone home for the Holidays!!

Kaitlyn's Hair after a Bath! Curly, Curly. It Dries Straight as a Pin!

Happy Girl on Bi-pap Playing with "Bun, Bun". (Aunty Cindi gave her this Bunny when she was only six months old. She won't sleep without it!!)

More Nursing

Kaitlyn has FINALLY been given more nursing hours. Home Care has finally arranged with VON services for more nursing hours for Kaitlyn. We were getting three hours twice a week for respite visits from a VON nurse. We were told that Kaitlyn requires visits from a Registered Nurse, my understanding is that nobody else has the necessary qualifications or training to deal with her level of care. Even the VON nurses here have never dealt with a child using a cough-assist machine and bi-pap. I haven't met a single VON nurse who has even heard of the cough-assist machine before arriving in our home.

Home Care decided to request morning VON respiratory services. We now have a nurse in our home every morning Monday through Friday from 8:00am until 10:00am performing all her respiratory treatments. So far it has been working out OK. They were supposed to send Kaitlyn's regular nurse in this week, and start introducing more nurses for training next week. But the last two mornings we have had two nurses, Kaitlyn's regular nurse and a newbie. It has been tough on all involved! Poor Kaitlyn is just trying to get used to having somebody else get her out of bed in the morning. Now, she has to tolerate having a new nurse practice using the cough-assist on her and learn how to suction, carry and position her. As she is still really a baby she gets a little nervous when they don't know what they are doing!!

The first new nurse was a "swirler". This term is coined by another SMA Mom. (Thanks Jennifer). The nurse is used to dealing with a trach and when you suction a trach you swirl the catheter around in a big circle the diameter of the trach tube removing any secretions as you pull the catheter out. Well....as you can imagine, poor Kaitlyn opens her mouth to get suctioned and has a catheter placed to the back of her tongue and pulled out in big circular swirls. SHE WAS NOT HAPPY. She cried through the rest of the cough-assist treatments that were done that morning!!!

The new nurse that arrived this morning was much better! I couldn't have picked any faults with her visit. The biggest issue is that one visit is not enough to learn Kaitlyn's routine. Let alone learn all of the minute little details that are part of taking care of Kaitlyn. Our regular nurse is off on Mondays so I am interested in who they're going to send to replace her this coming week. It should be an interesting morning.

I'm hoping that this all works out as it gives me more time in the mornings, one of the busiest times of my day. It also means that my boys will now be supervised in the mornings. No more running wild for two hours while I deal with Kaitlyn.

Saline nebs are still working out really well. I cannot believe the difference in her. I haven't added the afternoon neb yet. I have been thinking about it, but she has been so good thorugh the afternoons the past few days that I don't really want to change anything yet.

Saline Nebs

Well we spoke to our pulmonologist during our clinic day about trying saline nebs. We have been having issues with Kaitlyn's secretions since the colder weather started in September. We are noticing her secretions are thicker and all in her throat. Since we have had three colds go through the house beginning in September we sort of thought that the secretions were residual from the colds. But she just never quite gets better. This led us to the conclusion that the secretions are probably more environmental. A few weeks back I turned up Kaitlyn's humidifier on her bi-pap and she seemed to get a little bit better for a while. So then, networking with a few experts ;O) , we decided to ask about saline nebs. Our pulmonologist said that sometimes they have very good success with nebs and sometimes all it does is causes even more secretions. Well we decided to give it a try. I figured that it was worth a shot. I was already having to sit close by with suction in hand!

So far it seems to be working! For the last three mornings we have run saline nebs in line with her bi-pap. It seems like I'm getting a little more out of her with her morning respiratory treatment. This is really good as her secretions are much thinner throughout the morning and early afternoon and I am suctioning MUCH less. She has been going full half hours without suctioning! She hasn't done this since summer. Her secretions begin to thicken when she gets up from her afternoon nap, so I'm even considering doing another neb at the end of her nap. I'll give her a couple more days with one neb in the morning and then I'll try the afternoon neb and see how she does. Baby steps!

Tim's hernia surgery went well. He is pretty sore, and still not up and down very much, but doing a little better each day. Tim's Dad "Grampy" has been staying with us to help with the boys. I couldn't handle Kaitlyn and the boys in the mornings and the evenings. Throughout the day I can manage all three, but Kaitlyn's morning treatment takes a long time and she takes forever at night with her bath and resulting drool! The boys need supervision during these times. Thank goodness for Grampy!!

A picture of Kaitlyn sleeping while getting her saline neb. She sleeps through me stopping bi-pap, breaking the line, adding the neb. to the line, restarting bi-pap and turning on the nebulizer machine. She doesn't wake up until I have to suction her.

Owen writing letters to Santa. He had me write down what he and Kaitlyn wanted for Christmas and when I asked him what Alexander wanted he took the notebook back, ripped the page out and then told me I could write Alexanders' on another page! Funny boy!

I was drying the dishes a few mornings ago and paused for something.....then I felt a tug on my towel. The camera was on the counter in front of me!! What an opportunity! My boy loves his damp dish towels....what can I say?? He's just an odd little guy ;O)

Twins are Two!

Well the twins are officially two! They have already had their presents and cake before today, but they were officially two at 5:30 and 5:46 am this morning. Alexander is the oldest. They were delivered extremely fast. (I woke up at 4:00 am that morning and we live about twenty minutes from the hospital.) They were born at 32 weeks and spent 15 days in NICU. They had feeding issues and a little jaundice. It's hard to believe it's been two years.

I haven't anything elegant to say. My brain doesn't do elegant on so little sleep. We are just so thankful to have both of our twins alive to celebrate the day. Kaitlyn has now lived to see her second birthday, something that our neurologist told us would probably not happen. We are hoping to have her with us for a few more years with the respiratory protocols we have worked so hard to set in place. She is a lot of work, respiratory treatments 3 times per day, feeds through her gastrotomy tube through the day and continuous feeds via feeding pump overnight, medications several times a day, extra long bath for therapy, close attention to skin care, range of motion exercises and more. Wow she's a busy girl! Kaitlyn is a very good natured baby, never fussy unless she needs something. She is getting better at letting us know what she wants. She does get bored often though, because as weak as her little body is there is nothing wrong with her brain.

Alexander is the funniest and happiest little guy that I think I have every known. His newest line is "I fwunny!" followed by a really odd little laugh :O) He's a very comical little fellow with a wonderful sense of humour. He also has a tender side that he likes to display when around his baby sister. He kisses her all the time, passes her toys and tries to play with her, and rubs her hair and says "Nieee" and "Awe baby girl".

I think that our family is very fortunate. We have three wonderful children and our family is all together.

Some early pics of the Twins!

Neurology Clinic

Well we had our neuro. clinic yesterday. Everything went well, Kaitlyn was happy all day. Actually I haven't seen her so talkative (baby babbling mostly) in a long long time! But it was good as she was really loud and almost annoying while visiting her neurologist! We had to shush her several times, and as she just grinned at us, we had to bring out Dora DVD's and she was a happy (QUIET!) girl :) Kaitlyn's neurologist seems pretty impressed with her. I think that he is amazed that she is even still alive, but also impressed with the condition that she is in. He always remarks on her movement, and personality. I think it was his clinical nurse that commented on the condition of her skin, which is really good, but we have to do a bit of work to keep her that way. We have to be extra careful to dry her really well, we can't use scented products, and she takes her acidophillus every day to combat the yeasty issues so common to our SMA children. Kaitlyn's neurologist also always checks her back and comments on how straight it is; she has no visible curve as of yet. He seems a wee little concerned about her cognitive abilities....but I guess if he only knew her like we know her ;0) She knows how to get what she wants, there's no dust on this girl!

Our appointment with OT/PT went fairly well. OT has requested the aid of a couple more specialists to figure out seating for Kaitlyn. She says that the rep. they are getting help from is a fan of Permobile products and he's in Ontario. I'm glad because I like the quality of the Permobile products and the versatility of their products. OT is nervous about funding as the Permobile chairs run upwards of 20,000! Oh well if that's what she needs, then we'll find a way! PT was really concerned about Kaitlyn's ankles. My husband and I have been after proper bracing for a year now. No amount of stretching alone is going to prevent contractures when there is no muscle tone to aid the stretching! Now her ankles barely meet ninety degrees, and her feet rotate out...toes in. So now we have to have some sort of specialized orthosis made to hopefully help correct this problem. They don't seem too confident that it will help much! Even if we can keep her from getting any worse, I'm willing to try.

Our Social Worker started off our day with a birthday cake for Kaitlyn. I wish that I had thought to take pictures! A Dora Cake and Kaitlyn was appropriately impressed! It was very thoughtful and sweet of her. We should be the ones buying her little goodies as she is a god-send. She helps find us funding in all sorts of interesting places!! She is supportive on a level that takes a lot of the stress out of our lives. She arranges meetings for us with our doctors, makes sure that Kaitlyn is always receiving the level of care that she deserves. She's always suggesting people and foundations that can help make our lives easier. I'm sure there's more she does...she listens to me rave whenever we are in hospital or are having a difficult week.....this has happened quite a bit. Sorry Hali!

We didn't get to see our dietitian. We were running behind the whole day. The visit with our pulmonologist went really well, I thought. I was a little nervous going into it, but he really seems on top of things and on board with Kaitlyn's protocol (Both in hospital and out). He seems a little concerned with how much work she is for us, but seems impressed with how she's doing and how we're coping. He listened to her lungs and says she sounds clear (he spent a good deal of time listening!). We have also decided to try saline nebs to see if it helps Kaitlyn's thicker secretions. He was of two opinions, either it will just make her wet causing more secretions or it will help loosen up the thicker secretions so we can cough them out and go on with our day. In effect helping to dry her up a bit. We are of course hoping for the latter. Some days all I do is sit close to her and suction all day long....this makes house work and tending to the boys hard to do!

We had Kaitlyn's bloodwork done to check the higher dosage of enoxaparin. So far everything looks good! We will see if the increased dose does anything to her bloodclots. We have another ultrasound scheduled for mid-December, so I'll let everyone know how it goes! Keep your fingers crossed until then please! I really hate giving my daughter subcutaneous injections twice a day. She has very colorful legs now too!

There is another SMA family in Halifax. Their child is a Type 2 and while the course of a type 2 is a little less severe than a Type 1 it is still a devastating diagnosis for any family to have to receive. Our thoughts and well wishes are with this family. We will be doing all that we can to support them in their quest to improve the quality of their child's life!

I hope all our friends in the States had a wonderful Thanksgiving filled with precious memories.
Keep up the good fight....as the saying goes!

Quiet Days

We've had a few quiet days around here. Kaitlyn is over her cold but we are back to this thicker secretions that keep coming and going. Her sats are unaffected, and she seems happy. We have to be really careful to suction her often, and always suction before we pick her up or change her position! She can't tolerate sitting up very well at all these days. Even sitting up in my lap for a couple of minutes causes her to choke! I wish we had doctors around here that were even sympathetic to SMA. We do chest percussions and cough-assist three times a day and increase this to every few hours around the clock when she is sick. We also do postural drainage. I spend a great deal of my day performing some sort of respiratory treatment. Tim always does the last treatment of the day to help out. I don't think that the problem is too few treatments as her lungs are always clear. X-rays are always clear and doctors at the hospital are amazed at how good she sounds most of the time. We have had very few issues with plugging. So this thicker increased secretions has me baffled. There are things that we would love to try, but there isn't a lot of support from our local hospital and even less knowledge about SMA.

We have a neurology clinic coming up this Wednesday. We always seem to have a lot of things that we want to accomplish and only half gets done! Hopefully this clinic will be very productive. We have to meet with our new pulmonologist. The pulmo. we were seeing has resigned :( Our new pulmo. is actually the first pulmo. we ever saw. Kaitlyn was only five months old, just diagnosed, and he told us that a respirator was no way to live and that the cough-assist wasn't used on infants so young!! He's a very nice man, but he's a CF man. If I hear him compare SMA and CF again I think I'll say a bad word! He doesn't get SMA but I have no doubt that he is very good at what he does. I am hoping that we can come to some sort of an understanding about treating Kaitlyn. I think that she has outlived any expectation that he had, and given our hard work to get her here, he may be more willing to listen to us now. I hope so because I want to discuss with him Kaitlyn's secretion issues, and I'm really hoping he doesn't feed me the line that it's the natural progression of the disease. We'd be really interested in trying IPV or nebs, but I think that IPV is the wave of the future. Some hospitals are having very good success with this machine and I know it could have been very helpful last May when Kaitlyn had an awful chest cold for three weeks, two of which were in PICU! I feel like we need to get IPV going sooner rather than later, if she's too old she may not take to it so well.

I'll let you all know how it goes! Thanks for listening!

Alexander has been very busy the last few days!! The terrible twos have begun!! And Home Care Services (paying for VON nursing) thinks that we only need four hours a week nursing!

This was the first peice of work. He was helping to clean up! Yes....that's playdough, his morning toast, toys, Kaitlyn's brand new book, Owens view master, and sippys(the only thing he is told to put in the sink!!!!).



His other new favourite(which I actually don't mind....but he thinks I do ;) is to get in the toy box and huck everything out onto the floor! This lasts for several minutes and I can tell where he is from all the noise when things crash to the floor!

First Snow

Well we've had our first snow fall here in Halifax, Nova Scotia. This isn't a good pic, as my camera sucks and it was still snowing when I took the photo. I'm not much of a photographer anyhow, no time!! It was very pretty out when I took the photo.







Everyone is doing well. Kaitlyn is getting better by the day. She choked a bit on secretions tonight but overall has been doing very well, just a little more wet than normal. This fall has been awful for colds. I'm really hoping that this is the last cold that we see for a while.

We have been battling to get Kaitlyn some things. We are still fighting to get her into a wheelchair. They e-mailed me the other day and ask when we could come in for another wheelchair trial. I am so frustrated. I told them that I wasn't going to waste anymore of their time, or mine!, until they could get us a proper set up to trial. They have been getting us to use a power base and mounting Kaitlyn's stroller seat to drive from. There is nowhere to attach the type of mini joystick they have for her to try, which is also completely inadequate! It's the little button mini and her hand has to be perfectly over top of it to make it work. Kaitlyn doesn't have anywhere near the strength to balance her hand on the joystick and still have the strength left to move the knob to drive the chair. They haven't any switch operated drive controls for us to try, no proper mini joystick, no eye gaze and no proper wheelchair seating (of any type!). They say that we can't order a chair until we know what will work for Kaitlyn, and what she needs! They also say that the companies are not willing to lend equipment for us to try if we aren't going to buy! There is something very wrong with this picture! So I sent them a bunch of info that I could find, and that was graciously sent to me, about what types of things work for type 1 children and told them to see what they could come up with! I'm going to start kicking up a bit of a stink if they haven't gotten some answers for me by the beginning of next week. I got our social worker involved today, and next week will get our neurologist on board also. If things don't start happening faster now, I'll have to take things to the next level.

On a good note funding was approved for us to get an oxygen concentrator. We have always payed yearly and monthly fees just to keep oxygen tanks in our house in case of emergencies and for when Kaitlyn is really sick. The government will pay for oxygen in the house, but only if the patient needs it 24/7. Which of course Kaitlyn does not. But after her five-seven minute blueberry blue spell a year ago November (aspiration), Tim and I decided then that we would never again be without emergency oxygen.

We are also trying to get a secondary cough-assist for our home. This is something that my husband and I feel is really important. Kaitlyn has no power to her cough, not enough to clear her own airway, even with manually assisted coughs. Without the cough-assist during an aspiration or plugging episode we would have to call EMS and they would give her O2 and take her to the hospital where they would most likely intubate her to secure her airway. Our hospital only has one cough-assist, so even if we took her straight to hospital there would be no guarantees that the machine wouldn't already be in use. The trouble we run into all the time is that nobody really understands how weak Kaitlyn really is, they think that since we manage her at home, and as she isn't trached that she cannot be respiratorily THAT BAD! They see her in clinic and how she is breathing just fine off bi-pap and no difficulties, that they have witnessed, that she must be pretty strong. I sent an e-mail including some articles to hopefully help back our desire for a secondary unit.

Keep dodging those bugs and I'll let everyone know how it goes with our battle for mobility!

Feeling Much Better

We are feeling much better in the Hatchard household! Alexander and Owen still have a bit of a residual cough, and Kaitlyn still has a bit of thick junk in her throat. So far so good! She slept through the night last night. The first time in a few nights when I didn't have to get up and cough her. Hopefully she'll get rid of this thick stuff before too long. I'm feeling a little washed out from missing so much sleep heading into and over the weekend. I should be able to catch up over the next few nights.

Tim goes for surgery Friday 28th to repair the hernia in his lower abdomen. This means that Tim will not be able to do any lifting for at least three weeks! This means that I have to do ALL of Kaitlyn's lifts, including baths! I am not looking forward to this.

My sister was in to the city today, she lives two hours away. She doesn't get in much. She took some photos of the kids. She has a much nicer camera than mine! My shutter is on the fritz.

Kathy loves Kaitlyn's eyes.

Close Up! It's those eyelashes that everybody LOVES!!

MaMa and Kaitlyn. Kaitlyn always says AWWW when I lay my cheek on hers.

Kaitlyn got a Cinderella Dress and Barbie for an early birthday present from Grammy and Grampy. It's going to look beautiful when she is well enough to be wrestled into it!!!!



Alexander had WAY TOO MUCH excitement for today! Grammy and Grampy all weekend to help out because Kaitlyn was really sick; then Nanny, Auntie and two cousins today....he was burnt. Took some funny photos after this but can't post them! :)

Kaitlyn wanted to hold his hand! She doesn't often get to see him so still!

Close-Up! Too Cute :)

A Little Better

Kaitlyn is doing a little better. She still has some crackles and we are getting a bit up. Secretions are a bit on the greeny side. Her suction bucket looks like it's growing moss! (Hows that for graphic?) My guess would be a pseudomonas flare up. We put her on antibiotics again, so that should help keep the pseudomonas under control. Her fever did come back yesterday, but has been managed with just Tylenol. I haven't checked it yet this morning, she is sleeping so sound I haven't wanted to wake her. I'm still not sure if we are dealing with aspirant or a chest cold. None of the rest of us have developed anything in our chests, so I'm not sure what to think. My throat is a little more sore today but it's probably because I've been awake for 26+ hours now and am really tired. Tim is coming soon to relieve me for morning physio, so I think I'll go get some much needed rest.

Kaitlyn Really Sick

Kaitlyn is really sick this morning. Holding sats of 93-95% on bi-pap. Her lungs went from clear and dry when I went to bed, to really wet and crackly this morning at 5:00 am. Tim thinks she aspirated secretions, but I'm not sure as she is getting worse. When she has aspirated in the past it has taken a few round of coughs and physio, but she has always gotten progressively better. We have called our ped. in case we have to take her into hospital. When she woke up she didn't have a fever but when we checked her at 10:00am she had a fever of 39.4(102.9). We gave her some Tylenol and her fever is down to 38.6. We have also started her on antibiotics and are hoping we can stay home.

Will update again when I can.

Poor Alexander

Well the cold has us all fast in it's grasp now. Alexander came down with the cold today. He is running a fever tonight and looking pretty pathetic the last couple of hours before bed. He was pacing the hall tonight sucking his thumb and dragging a sookie. He wouldn't eat his supper, but he did have a small snack before bed. Kaitlyn is the same, lots of thick white/clear gunk coming almost entirely from her throat. Her lungs at this point are still clear, and we hope to keep it that way. We have added an extra treatment through the day, and are suctioning her more through the night. I won't do treatments through the night when she is satting 99-100% because I feel that she needs her sleep(and without nursing help....so do I!). We do suction her through the night as we don't want her to aspirate those secretions. Tim is still quite hoarse and so is Owen. So far I'm doing fairly well, still just a mildly sore throat and not much else:) I guess I don't have time to get sick!!

We appreciate all the well wishes and thank everyone for checking in on our girl. Especially since those checking in also have sick children at home! Here's hoping that we're just getting this all out of the way before the holiday season!

MaMa reading the kids a book. Kaitlyn likes to point at and touch everything.

Kaitlyn wasn't crying in this pic....this is how she looks when sick!

Cold Update

Well, it was bound to happen. Kaitlyn is sick too. Tim and I have it too! Alexander is the only one right now who seems to be unaffected. My symptoms aren't that bad either, mostly just a bit of a sore throat. Tim's whole voice has changed and he has a bit of a dry cough. Owen's voice is hoarse and he has a wet sounding cough. Kaitlyn went to bed last night symptom free and Tim and I were interrupted by her alarms just as we were getting ready to go to bed. Her sats were 93% and her heart rate was quite high. Tim suctioned her and got a lot of stuff out of her mouth. She was then satting 95%. I did some rounds of coughs and then got her out of bed for a full treatment. Then we did more coughs and I was able to get her back up to 96-97%. When I put her back on bi-pap she was satting 98-99% and other than being slightly wetter than normal she maintained her sats throughout the rest of the night. I let her sleep as her sats were fine and this cold seems to be another head cold.

Today she got up and she was fine. Her sats were a little low first thing this morning, but after her morning respiratory treatment she was back to normal. This cold is not in her chest, it seems so far to be all in her throat. There's nothing in her nose this time, not like the last two colds. She was really drooly today. Kaitlyn hates to drool...she tends to try and hold saliva in her mouth, swallow some and choke on what she cannot manage. This makes it harder for me because I have to stay pretty close when she's like this so she won't choke. The good thing is that she is flowing and not plugging. She felt warm all day but she doesn't have a fever yet. I think we'll just have to watch her close for the next couple of days.

I'm really hoping this is the last cold we see for this season!

Owen's Cold

So, Owen's fever was gone this morning, but his nose is still stuffy and he had to stay home from Nursery School. :( His voice is a little off, we asked him if his throat was sore, but he says no. I'm not entirely convinced as he didn't eat well again today. Typically Owen EATS....and eats well. Tonight when he went to bed he was really quite hoarse. Tim got him up to pee tonight and he had a really croupy sounding cough! So far nobody else is sick. I woke up with a sore throat, but I tend to get sore throats at the drop of a hat....so I'm never really sure what the cause might be. Kaitlyn was fussy today, but she has had fussy days lately when she was obviously not sick. She wants me to hold her a lot lately. I'm not sure if it's the closeness she wants, positioning, or if she's just bored and wants to be up and moving! She sure is getting heavy, my back is in spasms over lugging her about. We NEED to get this girl mobile!

Our paediatrician called today with the "official results" of her diagnostic imaging last Friday. The arterial clots seem to have gotten better in both legs. Some of the veinous clots are worse. We have decided with the Haematologist to increase Kaitlyn's enoxaparin dose and continue the injections for a while longer and see what happens. We are making an appointment to go see the haematologist sometime soon to discuss a future plan of action. We need to plan for central lines, where to place them and a course of action to avoid any new clots. Tim and I were really hoping to be able to stop the subcutaneous injections. Perhaps if the increased dose of enoxaparin dissolves the veinous clots we can discuss with the haematologist an alternative treatment to avoid future clots.

Fever

Owen woke up this morning with a fever and stuffed up nose. He was clingy all morning, not feeling like eating either. Definitely not Owen! He fell asleep around 1:00pm this afternoon, and Alexander fell asleep too. Alexander didn't have a fever but was REALLY ornery all morning. NO NO NO is the flavour of the day! I can't remember the last time either boy(especially Owen) had an afternoon nap. Kaitlyn was a doll all morning, she was very happily watching Dora DVD's and I hardly suctioned her at all.

I guess we'll see what the afternoon and evening bring!

Blood Clots

Not much new in the Hatchard household. Everybody's fine, and Kaitlyn has been doing really well. We haven't had to suction her very much at all the past few days. She has even tolerated sitting up for short periods. We had an appointment early Friday morning with diagnostic imaging at our local children's hospital. It was an 8:00am appointment which means that we had to get up by 6:00am in order to complete Kaitlyn's morning treatments in time. Kaitlyn was having an ultrasound on her legs for bloodclots discovered in the groin of both legs during the summer. The bloodclots are a result of past central lines placed in the groin.

Typically this type of clotting in a baby, and in the groin, would not have been treated. But it was decided in Kaitlyn's case that we would try treating the clots as we are trying to preserve the groin for future central lines. Access for the purpose of central lines is extremely important for Kaitlyn as I'm sure you all know how difficult any access is with our SMA beauties. (They sure do like to be difficult!)

The clot in Kaitlyn's right leg was old when we found it back in July. I then asked during rounds if we shouldn't be doing an ultrasound on the left leg now to check for clotting in that leg. Sure enough, another clot! They said good call "Mom".

We began treating Kaitlyn with Enoxaparin subcutaneous injections. It is a heparin type blood thinner. We had the ultrasound on Friday to see if the clots had resolved or were resolving. Some of the clotting in the arteries has cleared, but there are still clots in the veins of both legs. The clots do look better now than they did back in August, but we were really hoping to stop the injections. Kaitlyn's legs are all bruised up.....poor thing! Her right leg has been rendered inaccessible to future central lines...too many collaterals have formed. The left leg should still be accessible, but clotting is always going to be a concern from now on.

Apparently this type of clotting isn't that common with SMA, so I'm thinking that we may have to do some further testing to figure out what makes Kaitlyn different. She may end up on some sort of more permanent anti-clotting medication. Enoxaparin injections are very safe and bloodwork only needs to be done once a month, or more. But the drug is not cheap, and there is of course no coverage for the needles. The other issue is that giving Kaitlyn needles twice a day isn't pleasant.

Kaitlyn's newest thing is books. She has always liked books, but has sometimes been a little indifferent, or asked for Dora instead. Well lately she has taken a huge shine to reading! She can't get enough! We read her a half dozen books...sometimes more, stop reading and she cries....and cries. She really likes the lift the flap books, and we have to help her lift the flap(again and again). She will sit up in our lap the entire time, which is good for her really. But it does get tiring. We need to get her on the computer so she can "read" books herself!

Her other new favorite thing is anything that Owen is playing with! If he's got it she wants it! And she cries when he walks away and won't stay right in front of her and play! We really need to get this girl mobile so that she can follow Owen and watch what he's doing. He is apparently where all the action is!

Books...books...books!

The very popular Spidey Chair...she just had to have her turn. Just try to tell her that it won't support her!!

Alexander and I fight for dish towels, his favorite thing to suck his thumb with!!! Of all things! I think that I go through six or more dish towels every day. He calls them sooky!

Dry Air

Apartments are such dry places! I think that everyone leaves their heat up full blast, and never opens a window for some fresh air! So far Kaitlyn is continuing to do better with her bi-pap humidifier turned up and fresh air from outside when weather permits. I can't open the windows when it's too cool outside. I barely suctioned her at all this morning. I'm so glad that there are parents out there that care, it really does help to talk things out.

We had a family doctor's appointment yesterday and we descended upon the place en-mass! When our family visits the doctor we all go together and everybody's issues all get taken care of at the same time. Thank goodness our family doctor is so sweet. We all had our flu shots and other than the boys' arms being a little sore last night everybody is fine. No adverse effects. Tim has a hernia that he needs to have surgery to fix. He's not supposed to do any lifting for a few weeks after. There goes my back! Not too sure when he will be able to get the surgery though so it might not be until the new year.

I think that lifting Kaitlyn is getting to be one of the hardest things that we have to do every day. When your child only weighs 20 something pounds you think, it's only 20 something pounds. But when you stop and think about how many times a day and for how long you are doing the lifting it all adds up to too much pretty fast! The worst is lifting Kaitlyn down to the floor and back up so that she can play with the boys. Coincidentally the floor is also the safest place for her to be with the boys around! We may have to look into getting Kaitlyn some new equipment to lessen the need to lift, and make the lifts we must do easier. Unfortunately this all costs money! Sigh!

Hope everyone has a good weekend. Lets keep avoiding those bugs and broken bones!

Thanks!

I would like to thank everyone who gave us suggestions to help Kaitlyn with her sinus issue. She has been better the last two days, not needing near the suctioning. I did two very simple things. I started opening our windows through the day for some air exchange, which also changes the humidity in the whole house! And I turned her humidifier up on her bi-pap. I had the humidifier turned down quite a bit because of her recent cold. When Kaitlyn is really wet with cold I have to turn the humidifier down so that she doesn't need a lot of suctioning through the night, otherwise we don't get any sleep and she chokes on secretions. Because she didn't seem to be getting any better I hadn't turned the humidifier back up. I guess I won't make that mistake again.

We may have to think about buying a humidifier for the winter months when it's just way too cold to open the windows. I'm glad that we were able to solve her problem without adding a whole lot to her normal routine. She hates it when she has to stay in her room in the morning until physio and coughs are done. She can hear the boys out in the living room and naturally wants to be with them. The other issue is that the longer her morning routine takes the more damage control I have to do when we finally get out into the living room, as the boys have been unsupervised for this time.

I think we may still look into neb treatments, as I think that there are times when even just saline could be beneficial. Hope everyone keeps dodging the bugs!

Nudge, Nudge.

Thanks for the nudge to update our blog! Kaitlyn has been doing fine the last two days. She is definitely better, but we are still having some thicker than normal secretions and I am still having to suction every few minutes. For Kaitlyn this is abnormal. Before September started we would suction very little between cough-assist rounds. Now since the change in season we are having an increase in secretions and the secretion are thicker than "normal". I put normal in quotations because normal changes often. I am starting to wonder if some of Kaitlyn's trouble with secretions isn't environmental or allergy. I have had something wrong with my sinus for the last two months also. Nothing serious, just an annoying post nasal drip. I may have to look into trying something to help dry up or at least thin out her secretions. I can hear her swallow a lot and sometimes she sounds like she has something in her throat, and we suction and nothing much is coming out. Other times we are getting out a thicker chunk of something. She is getting lots of fluids so it's not that she is dehydrated in any way.

We went over to see friends last night. What an undertaking! We don't do it very much. Kaitlyn did really well, only a couple of fussy spells. No respiratory problems at all to speak of, except the constant suctioning. The boys had so much fun with the exception of a little drama to start out. (Alexander pretending to be shy!) They dressed up and went out trick or treating. Kaitlyn didn't go out, we are still having to suction her too much for her to have had any fun. We stayed inside and had tea and chocolate bars....yumm! By the end of the evening 7:00! Kaitlyn was so tired. We packed everybody up, she fell asleep on my shoulder. We got everybody home and Kaitlyn was pretty upset as her nightly routines were all disrupted. She fussed through a quick wash and physio. Then tried to sleep through cough-assist....poor thing! Her heart rate was 150-170 and her sats were 95%, and she had a temp. of 38.7! All because she was exhausted. Once she was on Bi-pap she settled out to her normal levels for heart rate and sats. Her temp. was gone this morning. Sometimes I forget just how fragile these children are until you take them outside of their comfort zone.

Kaitlyn and Alexander enjoying some couch time together the other morning.

This is how I found my boys watching TV yesterday before leaving the house.

Spiderman...A.K.A. Owen!

Paediatrician Appointment

We went to Kaitlyn's Paediatrician appointment today. Kaitlyn made out just fine. She choked on secretions while in the doctor's office, but otherwise it was a good trip out. She absolutely loves getting out in the van. She sat in her Max EasyS while in the van today. It's the first time that we haven't laid her down with her E-Z On vest. Not only did she travel well, she loved being up so high to see out the windows. She made all kinds of happy noises, wouldn't be quiet, and wouldn't stop laughing....so she got the hiccups! She is such a funny good natured kid, full of spunk and life!

She was 11.8 kgs (26 lbs) and (86 cm) 34 inches long. She's a tall chunky monkey. She hasn't gained a lot of weight over the past few months. I think she is starting to level out a bit. She looks really healthy though.

Her cold....well she still has it, but the last two days haven't been too bad. She is mostly just got extra junk in her nose and throat in the morning. As the day goes on she is not too bad, and then gets a little worse around bedtime. Since she isn't running a fever, her sats are fine, and she doesn't even really look sick, we will not start an antibiotic at this time. I've had a bit of post nasal drip myself, with only a slightly sore throat, so I think that this is all just a mild cold running through the house. We decided to go ahead and give Kaitlyn her flu shot today. So far tonight her heart rate is really good, better than it's been, and sats are normal. She probably just needed to get out of the house.

Kaitlyn needs to go for blood work in the next little while. We are going to have her B12 and folate levels checked. She has larger than normal red blood cells, but no anemia (thank goodness). The rest of her blood work we had done the last time looks good.

Dr. Bach is giving a seminar here in Halifax tomorrow at 8:00am, and we were invited to go very last minute. (Late this afternoon in fact). Unfortunately we will be unable to go. We have nobody to take care of our boys, Tim has to work (meetings that he cannot cancel), and there is nobody else that can take care of Kaitlyn. I would take her with me, but the seminar is not specifically SMA related, and I wouldn't want anyone to be annoyed at me for suctioning every few minutes the entire seminar. But what I wouldn't give to meet the man responsible for my daughter living as long as she has. I say him specifically as it was his protocol and research that we found first in our efforts to find ways to improve the quality of our daughter's life.

Confused

Now I'm confused. Last night was just awful. I was up with Kaitlyn four times coughing her, and Tim was up with her twice for suctioning. She was really wet and we were getting out some pretty thick junk from her nose. We have an appointment for the pediatrician tomorrow so we will decide then whether or not to start an antibiotic. I am also dreading what kind of a night we will have tonight. I can go one or two nights on next to no sleep, but anything more and I start to "malfunction". Especially since I have not only Kaitlyn full-time but my two boys as well. We only have a nurse for two hours twice a week for a total of four hours! Not nearly enough. Thankfully this cold or sinus thing(whatever it is) has not affected her sats, although last night and today I have seen her sit at 98% and even dip to 97% for a bit. While these numbers are excellent they are not normal for Kaitlyn.

My girl and me yesterday. She was a little cranky today having missed all that sleep last night.

Better Day

Well we had a better day today. It started out a little rough. We finished our first round of coughs and I was getting ready to lift Kaitlyn out of her crib when she started coughing. She couldn't get her breath the coughing was so intense. I suctioned her really well and then grabbed the cough-assist I got three coughs and a mouthful of yuck, suctioned and got a couple more coughs. When I got her mouth clear and she could breathe again I suctioned her nose and got tons of stuff! It just kept rolling out of her poor nose. When I couldn't get anymore out through her nose I coughed her again and didn't get much so we started our day as normal. The funny thing through this whole cold is that her sats have been fantastic 98-100% all the time. She had one or two little coughs through the day, but nothing serious. It didn't seem like I was suctioning as much today. Hopefully we have seen the worst of this cold and thankfully it has been really mild! The boys are both fine. They still have a bit of a dry cough, and Alexander's nose is still a little wet but I don't think I wiped it as much today.

Lots of Suctioning

Kaitlyn is still sick. She and Alexander are hit the hardest this time. Still no fevers and her sats are normal 99-100%, but her heart rate is still up 20-30 bpm. Owen was a little worse today, but they all still just have runny noses. Alexander started with a bit of a cough today, and is coughing a bit tonight since going to bed. I am really hoping that this cold stays in the head. The last chest cold put Kaitlyn in the hospital for two weeks. I really would rather not have a repeat of that, she narrowly missed intubation. I am on the fence with the antibiotic, she just finished a full round of Cipro. for her aspiration. It takes a lot out of her being on antibiotics, and she has been on them so often over the past few months. So far her secretions are thicker than normal and I am having to suction her every few minutes all day long. She is better at night on bi-pap. But what I am suctioning isn't colored, I'm inclined to wait another day or two and decide if she isn't getting any better.

We hope that Lizzy's Nina can soon get some sleep. Waking to alarms all night is no fun. I hope you can figure out how to help Lizzy get used to this new circuit(new mask and new Pap...no fun)! We are also hoping that Jacob's MaMa is feeling better tomorrow. Having the flu sucks!

My girl's happy as long as she has "Dora Dora....uh oh!" (I swear that's all she knows how to say!)

Another Cold

Well, we are dealing with another cold. I really hope this doesn't become a monthly occurrence. Kaitlyn woke up this morning with increased secretions which have gotten much worse throughout the day. She went to bed at 8:00pm with a fight. The only time she ever fights bed is when she is feeling poorly. She usually wants somebody to stay with her, preferably on a shoulder. I guess it's where she feels the safest. I've already been down to get her up once and hold her on my shoulder. It's the only way I could get her to calm down. She is really wet tonight. I guess there won't be any sleep for us tonight, as Kaitlyn sleeps in our room.

So far she is afebrile and there is nothing in her chest. She sounds really clear. I hope that it stays in her head like the last time. The boys aren't too bad, Owen is a little whiny and quick to cry(which usually means he's not feeling 100%) and Alexander's nose is running and he is still breathing through his mouth. This is awful cause he can't suck his thumb very well. He's pretty fussy too, poor little guy. Hopefully we'll have a relatively quiet night so that they can all get some much needed rest.

Sigh!

Sigh! Kaitlyn started this afternoon with thicker increased secretions. She was awake quite a bit through the night last night. I didn't think much of it last night, as it is fairly common for her to have a bad night now and then. Now I'm wondering if she wasn't feeling a little off. Alexander went to bed quite snotty, and Owen was just a little warm and whiny. Well, we'll see what the morning brings. Kaitlyn's sats and heart rate were excellent going to bed, so perhaps it won't develop into much.

Mouth Breathers!

Both my boys seem to have a little bug. Owen has been sneezing up a storm the past two days. He has had a dry cough also. Now today Alexander has had a stuffy nose, and he is breathing through his mouth. Poor little guy! He's a thumb sucker....he has to pause every few seconds for air. They seem fine other than these minor symptoms, but boy do I cringe everytime one of them sneezes. I can't help but think, oh boy...here we go again! Hopefully this won't develop into anything much, and will bypass Kaitlyn.

Bloodwork and Slings

We've had a few quiet days around here. Kaitlyn has been enjoying some play with slings. We have never set Kaitlyn up in slings before. She really seems to love it. She has always had some movement in her arms, and minimal movement in her legs, but she is enjoying the freedom of movement that the slings offer. She can really kick those legs now, she sort of looks like a little frog laying on its back. She is tickled when she can swing her legs far enough to "click" her heels together.

We have finished our round of antibiotics from her aspiration. She seems not to have suffered any set backs from this whole episode, for which we are very thankful. We got a call from our pediatrician at the beginning of the week. She says that Kaitlyn's recent blood work shows larger than normal red blood cells. I find this a little worrisome, as this has happened before, and in August when she had to go for emergency surgery she needed a transfusion of blood and platelets. I didn't really question this too much at the time I guess we were just so concerned about pulling through the surgery and getting her home and figuring out a whole new way of feeding our daughter.....etc., etc. Now when I look back I should have questioned why her platelets and blood were low. She had been really healthy before her J-tube blocked.

We have an appointment with our pediatrician in another week, so I guess we'll discuss a plan of action at that time.

Alexander has been really funny lately. He wants to be just like big brother. The other day Owen come home with a necklace he had made at nursery school. Alexander wanted one too, so I made him a necklace with some old buttons, and he was so proud to be just like brother.



Not sure what's on Alexander's face....we're going through a dipping faze.

Wheelchair Trial

Kaitlyn had her wheel chair trial today. She tolerated sitting up very well. We are trialing a wheelchair through our local children's hospital. You can tell that they haven't dealt with children like Kaitlyn before. It is soooo frustrating. The wheelchair rep. doesn't carry demo chairs and pieces. He has a base for us to trial, but the seating and joystick are posing a problem. The joystick especially is not working out. They keep trying to mount the joystick in the center but they don't even have an arm to put it on. They say when they find something that she can use then they will know what to order, and request for funding.

This makes me a little upset because I don't see how Kaitlyn can even learn how to drive without the proper set-up. She is very interested in grabbing the joystick and spinning the chair in circles. She thinks that it is funny when the chair moves, but she cannot make the chair go in all directions because she can't move her hand in the required positions. I have shown them some things that have worked for other SMA children, but they are more interested in trying to make what they have work.

Kaitlyn enjoyed the afternoon out of the house. She loves going in the van, and often asks "Go..car-car". Here's a pic of her on the way home today watching, what else, Dora!

Update

Kaitlyn has been doing well the last two days. Her secretions are increased and thicker than normal. My biggest concern is her pseudomonas. We have been watching her extra close, and are doing extra treatments. Tomorrow I will try to get in touch with our pediatrician. We have started an antibiotic just to be safe. Her fever only ever spiked that once and after one dose of tylenol never came back. I think that we were lucky and managed to get out what she aspirated. It is very unlikely that she aspirated anything more than her own secretions. There was no indication that she aspirated formula.

We are supposed to go for a wheelchair trial again tomorrow. It's the first one in a month! I think we'll go unless there are any major changes in Kaitlyn. So far she hasn't needed any extra time on bi-pap, her sats are fantastic (98-100%) just the increase in secretions. She may not tolerate any length of time sitting up tomorrow, but if she can just tolerate it long enough to check the adaptations they were supposed to have made then it will be a productive appointment. This chair would only be a loaner, but it will let her figure it out enough to get funding for a chair of her own. We are very anxious to get Kaitlyn moving.

Aspiration

Kaitlyn aspirated something very early this morning. Tim woke up when he heard Kaitlyn struggling with secretions. When he went over to her he said that she had a mouthful. She aspirated some of the secretions and her sats began dropping really fast. She only went down into the low 80's, but it was still pretty scary. It took several rounds of coughing to keep her sats from dropping further than mid-80's. I finally fumbled the O2 tank on, and we bled O2 through the cough-assist for a few more coughs. This really does the trick when she is dropping fast. She finally came back up to high 80's low 90's, but needed a little rest from coughing so much. Tim placed her in postural drainage and put her back on her bi-pap. She was satting 93-94 at this time. I started some chest percussions to help move secretions. With a few minutes rest and lots of suctioning, I coughed Kaitlyn again. She seemed a little better, satting 94-95 off bi-pap.

I put her back on bi-pap to sleep the rest of the night. I checked her temp. before crawling back to bed myself and it was 36.8 which is perfect for Kaitlyn. When she got up this morning she was satting 98 on bi-pap. She did really well through her first set of coughs, chest physio, and more coughs. I got her out of her crib, washed and dressed the same as always. She is maintaining sats of about 95% off bi-pap. Her heart rate is elevated and her temp. was up to 39.2 by 9:30am. We tried to call our pediatrician, but she didn't answer the page, so we got the on-call pediatrician at our local hospital. She has called in an antibiotic for Kaitlyn, so we will start that as soon as it's available.

Couch Play

The kids were playing on the couch tonight. I just thought that I would share the pics. Kaitlyn loves sitting up on the couch like a big girl. Owen was trying to play cars with her, but as you can see she was more interested in her precious piece of plastic! She has taken a shine lately to plastic from O2 probes, syringe wrappers, and such. She can't get it into her mouth, so we let her crinkle it in her fingers. I guess she's in love with the sounds it makes! Take her plastic away and she crys, so she wins! She even takes it to bed with her!

Crazy Hair

Kaitlyn has been doing pretty well the last few days. We have had short spells of sitting up...yay! I was reading the other day that symptoms of hayfever can happen while using Enoxaparin. Kaitlyn has been receiving enoxaparin injections for the past month for blood clots in the groin of both legs. I hope that she can adjust to the increase in secretions.

She was having an absolute BLAST tonight chasing brothers with Daddy. Tim carried her and hollered at the boys and everybody was running up and down the halls. Lots of noise, bouncing and smiles. Tim noticed how long Kaitlyn's hair is getting. I can't believe how fast the children grow! Our oldest boy, Owen, will be 4 years old November 14th and the Twins will be 2 years old November 30th.

Better

Kaitlyn is almost better now. She still has increased secretions, which we are still trying to figure out the cause. It seems like she should be getting better from her cold, but the extra secretions could also be her teeth. She hasn't had any choking spells the last couple of days. We have been able to carry her around on our shoulders again, and she tolerated her bath tonight without suctioning. We have also been able to hold her again, this is huge for Kaitlyn because she LOVES to be held.

Daddy indulged her Dora fetish over the weekend, he actually let her have Dora DVD while doing her morning breathing treatment.





They don't look much like twins, but sometimes it's priceless how much these two have similar facial expressions and interests.