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!