Tuesday, December 13, 2011

Henley reading!!

I know... I dont post for ages, then you get 2 posts in 3 days! Here is the little video I made of Henley 'reading'. Even though he cant sign or speak, we have found out if we show him a word once he will remember it! I think he picked the first few up from 'Your Baby Can Read' which I never thought he paid any attention to, but since then I can show him a word like 'ball' and he will go fetch the ball. I taught him 'wiggle' and 'kick' once and he still knows  them! Its good to see he is learning even if its differently to Skye (who we think is super smart) and evn if he hides it well!




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Sunday, December 11, 2011

Sensory Issues and Beautiful Photos

Henley finally had his occupational therapy assessment last week (we had been waiting forever) due to his only walking on his toes, and having his hands over his ears all the time. He also has meltdowns if another child cries or shouts, which makes going to the park an issue. Firstly, let me say that I know these symptoms, especially  when you include the fact that he doesnt talk at all are classic red flags for autism, but it seems that I was right to listen to my gut feeling that this wasnt autism we were dealing with. The OT diagnosed him as having sensory issues and may give us an official diagnosis of Sensory Processing Disorder after he is worked with a little more. The fact that he makes great eye contact with everyone (including therapists he has just met), loves to play and involves everyone and is extremently loving (he hugs everyone and is very social) means they are not looking at autism, and that his issues are likely all sensory. What this means in a nutshell is that he hates loud noises, they really bother him, almost causing him pain (he fell to his knees with his hands over his ears screaming the other day when Keith forgot and whistled) and he needs specific sensory input, especially if we expect him to concentrate. So he will be having deep tissue massages, wearing weights (sounds crazy I know) and playing with funny things likestretch body suits and pushing heavy things around. He LOVES all this by the way! and it explains a lot - when he gets all the toys out and instead of playing with them, ROLLS all over them, swimming in them he is trying to get this input. He is also so strong and a daredevil with no fear, common with sensory issues.

Skye is doing well, and we went to see a special VPK place last week, where they take them at 3 instead of 4 if they have developmental delays or health issues - she loved it! She instantly integrates into a classroom setting and is off, doing her little 'dance' in front of other kids (its her way of saying hi, as she doesnt speak) and playing with them. (Henley of course, is in my arms with his hands over his ears). I hope she gets accepted there as its exactly what she needs, she is like a social butterfly and never wants to come home when we go anywhere!

Finally, before I show you some beautiful pictures Erin took of them (thanks once again, I love them!) I must just say a thankyou to Shelby for entertaining/wrestling Skye while we were at the hearing clinic at CMS a couple of weeks ago (both of them passed their hearing tests by the way) - I guess she is definately more lively than she was last time you looked after her!


Here are the pictures, Henley was sleepy and almost fell asleep while he was on the swing, he's not normally this calm!!






Wednesday, November 16, 2011

Yes, we still have the trach....

So, I've taken a long time updating once again, I know, but I realized I never posted the results from Skye's sleep study. As expected, it seems she is still using her trach 'hole' to breathe through slightly. Dr Weatherly said she did well and better than he though she would - her sats were not affected by sleeping with the stoma covered up, although she registered a few minor episodes of hypopnea (shallow breathing as opposed to apnea, which is stopping breathing) which led them to conclude she has evidence of a mild obstruction. So no big deal, we will just keep her trach open for now, and repeat the study in 6 months or so. When she has no obstruction evident, she can get another bronchoscopy and they can sew up the hole if everything looks ok from the inside - I dont really want her to have a bronch before then, as there seems little point. Anyway, she is doing great and has 2 new words: 'baby' and 'more' This makes 5 words in total for her and 3 for Henley - I have no idea why they are reluctant to talk! We are still getting speech therapy twice a week and Henley goes for his first Occupational Therapy on Friday, so I will update. Finally, here are just quick 2 pictures I took - this time they are both Henley - one shows you what a strange/funny/odd (you decide) boy he is. He likes to watch tv from inside his basketball hoop...and one to show you Henley with his hair up (it was in his eyes,so I tied it up), when Keith came home he said 'Oh, now I've got TWO girls!' Still, it will be a great picture to show to his girlfriends in the future.....


Monday, October 3, 2011

Cryptic blog entries

Just in case anyone was wondering why occasionally there is a post with sports scores, and practice times, let me explain... Keith also runs a blog for his baseball travelteams and we share a computer. If I'm not logged out his posts end up on my blog. I delete them as I find them, but now at least this answers someone's recent question "what's with these random cryptic blog entries?"...

Friday, September 30, 2011

Sleep study number 3

This week Skye went for her 3rd sleep study at the Arnold Palmer sleep unit. They monitored her without the trach and her stoma open, and with it covered up with a band-aid (very hi-tech). We will see what they say when all the data is reviewd - my guess is it will be hard to find anything out as I think she slept for a total of 2-3 hours max. She went to sleep finally at 11pm, and they kept coming in all the time to adjust her canula, reconnect a wire, turn her over, cover the stoma, adjust the canula, etc and on it went. Each time she woke up, she started crying and pulling off her bandages (they bandage their faces to protect the electrodes on the face) so of course we would then have to start over. Finally after they wanted her to move from her stomach to her back again (she always has been a stomach sleeper) she woke up and after an hour of trying to get her back down (she was up and babbling) they abandoned the study. i think that was about 4am. Next time, its Keith's turn.....


Dont know how she slept at all with all this on.....
On the way to the study, I had to drop Henley off to Keith as he was finishing work, and the babies got to have fun and run around... as he was tidying up they were tipping stuff out he he he....


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Skye was having fun and was very upset to leave (we had to get going for the study) so threw one of her hissy fits, which she is getting really good at. Notice how at the end she stops suddenly, thats because daddy came over... they are both so good for him, and only do this for me!


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Finally, just wanted to say how gorgeous Skye's hair is and show all of you who havent seen her in a while how long and thick it is....I would love just half her hair!. Also there is a photo of Henley's 'tattoos' which he gave himself when he was left alone for a minute with a marker pen (well, could have been his face)

the tattooed toddler


Saturday, September 24, 2011

Therapies!!

So I have finally given in to the whole therapy thing - Skye and Henley will now be getting lots of therapy to try to get them to catch up as they are falling behind. Physically they are good, except Henley still walks on his toes and doesnt like loud noises. He may have some sensory processing issues so OT will be working with him to try to identify and rectify this. We are also going to get speech therapy for both of them as neither of them speak yet and they are nearly 2 1/2 yrs old. They will say mama, dadda and baba but seriously thats it and they have said these words since they were about 18months old!! They will both do some sign language with us and will follow commands but wont speak. Skye already has feeding therapy (but still only picks at tiny crumbs of food) and luckily our current therapist will also do the speech therapies. Henley also only drinks with a baby bottle still (he thows anything else back at you and says 'baba') which is no big deal to me, but I know its something our pediatrician and feeding therapist really hate....

Part of the problem I think is that they have been so isolated, which I did on purpose so that they wouldnt get sick. When Skye did get sick she would need oxygen and it was a big deal, and with their bad lungs, even a simple cold hits them hard. However, they are older now and I think they need to mix with other kids more. I have been tentatively looking at preschools for a while now, but they have never been clean or nice enough (I'm very picky) and then I heard about a place that Keith and I checked out last week AND LOVED! Its called Space Coast Early Intervention Center. Its preschool for kids with special needs, although they do take a number of kids without any issues as well. There are a lot of former preemies who are just behind a little, as well as kids with various issues such as CP and autism. Very nice place, super clean, with fantastic playground (designed so kids in wheelchairs can use it as well). They do special therapies there such as speech etc, and we will be enrolling the kids from mid October, for 3 mornings a week. As it is a non-profit, parents have to do volunteer work in the school (4 hours a week), which means one of the 3 days they are in class, I will be there with them. The only down side is its a long drive but its worth it. They will be getting their flu shots next week in preparation......

Wednesday, September 7, 2011

Another new shoes dance

So Skye has once again a 'new shoes dance' to perform for us all. When Henley gets new shoes he walks really carefully like he's forgotten how to walk, which is not nearly as much fun as the little tap dancing show we get from Skye... So here we are, New shoes part 2. next time I will try to keep the camera upright (I guess you live and learn)

Skye's new shoes!!
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Henley forgets how to walk because he has new shoes.... (maybe its because they arent normally allowed to wear shoes in the house?)


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They just love the camera now!

boo Boo saying Cheeeese !

Friday, September 2, 2011

Henley can swim!!

Yes, Henley has finished all of his swimming lessons and has passed his infant swim course! He is very confident in the water and loves it!. I have posted some short videos of him with his instructor ...


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Also this month, we had a visit from my frind April with her triplets. They stayed over and we had a lot of (noisy) fun. Skye is like a social butterfly and loves the attention. Next time I will take proper footage, these were just little 'shorts'!!


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Finally on the whole trach issue, we are going for another sleep study which Dr Weatherly the Pulmo has arranged. I am much happier with this rather than doing a bronch with and ENT under general anesthetic, and we really just need to see if Skye is using her tracheostomy opening at all (I think she does). He says if she isnt using it, the stoma should be surgically closed, but if she is using it, we should allow it to stay open (like it is now without a tube) as it shows she still needs some of the support it gives her. We can keep checking her every 6 months or so with a sleep study till she isnt using it anymore, and even though it doesnt show physically what her trachea looks like inside(like a bronch would) it will show us the physiology of her trachea (how it is working in practice).I am very happy with this, and even if she has to keep the little hole in her neck open right now, it seems like a huge improvement on the trach tubes, ties,and suctioning we had till recently!

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Sunday, August 7, 2011

Updated photos!!

So we have not put Skye's trach in for months now. I do put the cannula (tail of the trach) into the stoma (hole) each night just to keep it open, but its out the rest of the time. I truly belive the trach doc just wants to keep her trached for the $$$. Yes, there you go, I thought it for a long time, now I said it out loud.  They went to do a bronchoscopy last week, but the anesthetist at our local hospital was not happy putting her under without a PICU back up, so her procedure was canceled. No probs, now I guess we will be referred to someone else to decide whether or not we can take her trach out, when in reality I took it out last May. Ho hum, here are some updated photos!
S
This is what he does when you say 'show me your teeth!!'

Having fun with mashed potato.


Isn't she beautiful!!!! Skye on the giraffe feeding platform


Last May on their 2nd birthday at disney. You can see how much bigger Henley is !


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 Henley trying to use Skye's feeding tube on himself

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Henley playing with Skye's trach


Monday, June 6, 2011

Yes, I know....

You're all right, it has been a LONG time since I sat down to post. I keep waiting for things to slow down around here, but if anything they are getting busier, so I figure if I dont get back into my blog now, it will just fizzle out, so here goes !!!

Firstly we moved house. Only about 10 miles south of where we were but even though our house still needs some work, WE LOVE IT !!! We have been painting, painting and painting, although of course we can only really do this when the babies (still call them that, will have to think of a new word as they are far from babies) are asleep. We made the mistake of trying to paint one evening when Henley was still up, and suddenly I saw him running  past me with  yellow hands - he had found the paint lid. He also tries to rattle the ladder when Keith is up it, so we were back to painting at night time. The main color in the house right now for those of you who are interested is MUSTARD. Sounds horrible, I know but it looks fab and we love it, come and check it out when we are done and I will prove you wrong!!

Secondly I am in school!! I decided to go for Diagnostic Medical Sonography. I especially like the abdomen and cardiology side of the work for some strange reason... It will be another 2 years till I graduate, which seems like forever, but the timing will be good as the babies will be going to school as I start work. Most of my spare time after babies, chores and painting is now schoolwork, so yes, my blog has suffered.

What else... Oh yeah, the babies turned 2!!! We went to Disney and they enjoyed themselves, but half a day is enough. We got 6 month passes so we can keep going back and do a little at a time. It takes so long to get into the park from your car I think they thought that was part of the fun. All 4 of us crammed into one of Dumbos flying cars and went on that ride - they loved it - Im scared of heights so I had my eyes shut through most of it, while saying 'weeeeeee' like it was fun, they were fooled and said 'weeeeeee' back so it worked out.

I have photos, I'll upload them seperately, and I'm going to Target today to book them ion to get their 'official' photos taken, they always do a good job. Medically speaking there are no changes, Skye still has her trach, still pulls it out all the time and wont keep a cap on, she still is tube fed, but is starting to eat more food and to eat it more consistently. For 2 days I only gave her a little juice through her tube (2 oz every 4 hrs) to make her hungry and it worked. She did eat way more, but Keith said she was looking skinny after 2 days so I caved and she's back on pediasure. My plan is to fatten her up and then try again!

Henley still wont talk really, Im holding off on speech therapy for both of them for now, but they are doing loads of other funny things. Skye will do just about anything you ask her to - point to anywhere on her body, stand up, sit down, jump, brush her teeth, although she wont say any of it, and Henley likes to brush my hair, brush my teeth, and drive Skye's car (she has a powered car) all over the house. He is also huge and in the 80% for height and weight. You will see when I post the photos!!!

Tuesday, April 5, 2011

Tickle Time

Well as a family we have been really busy lately and the babies have been doing great, with everyone growing and learning new skills... even Henley is starting to talk (a little). He is still mostly the strong silent type, but he's getting there!!

Skye had a GI appointment today... I have to say it was as usual a non-event, where she is weighed, is looked at for 2 seconds and he says "she looks great, no changes". I'm not complaining - we are in and out in no time at all, its my favourite kind of appointment!! Coming up next month we will have the ENT (trach), Pulmo and 2 yr old check up/shots with the pediatircian, so I will enjoy the quiet while I can!!!

Last weekend we went to  he beach and whilst Skye still HATES the ocean and does not like being in the sun, Henley will run full throttle accross the beach and into the ocean as soon as you let go of him. He has to be carried out (crying). I bought them both new swimming shorts and those tight SPF shirts - they look like little surfers.

Here are our latest pics, I dont have many as my last memory stick was full and I only just got around to replacing it, but here we go.....




Tickle Time!!!

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Sunday, March 20, 2011

Baseball and a bump on the head

This weekend, Henley went out with Keith to watch his first baseball game and had a great time!!! I stayed at home with Skye but Keith said Henley was playing on the field next to the game, running and running (his favourite thing). He was also playing with a little girl (about 7 or 8) chasing her and running away. He was apparantly laughing each time the players were throwing the ball around and joined in clapping along with everyone else at the game and he came back exhausted!!!

Poor Skye !!!! She fell and bashed her forehead on the marble windowsill today.... she is going to have a corker of a bruise. As everyone knows Henley is always black and blue as he is always a daredevil and his favourite game is running with his eyes closed, but this is the first time Skye has really hurt herself. I think, however it may not be the last bump she gets as she is starting to become more adventurous...

One more thing.... I think we are entering into the terrible two's territory as both Henley and Skye have started to throw themselves around when the dont get their own way. Skye couldnt get her little purse open today and she started to cry then scream !!! I had to laugh but I'm sure I wont be laughing for long!!!!

Friday, March 18, 2011

Lazy Blogger

Yes, yes, I know I have been a lazy blogger this month...My resolution to post once a week isnt going well right now due to being so busy with everything else and the babies no longer let me sit at the computer.. in fact we no longer have any chairs out around the table due to Henley's climbing antics.

That said, I do have some updates from today's pulmo visit!!!! Firstly it's an important day as it was Henley's LAST synagis double torture shot(s) and he doesn't need to go back till May for a check up. Skye will go back next month and she will still be able to get Synagis till May when she is 2 due to the trach etc. Still I think it will a better visit for her without Henley as he does demand the most attention and his screaming and crying when he sees the nurse/doctor/receptionist sets her off too.

Skye weighed 24lb 7oz and was 31.5 inches. I personally think her weight last month which showed no increase was inaccurate as this is gain reflects what she normally gains in 2 months. She is the 5-10% for height (but am I !!!) and 25-50% weight

Henley weighed 29lb 12oz and was 35.5 inches. He does seem big. When I was holding him the other day, Keith commented he was almost as big as me now!!! He is (amazingly) 75-90% for height and 50-75% for weight

Monday, March 7, 2011

At the playground

So here as promised are some photos as taken by our official photographer Erin (Thanks!!) She visited and we took the babies to the park and she snapped away and got some great shots.

As for the sickness at home, I am all better, Keith had the sniffles one evening (that was it!) and Henley and Skye are feeling better (playing, eating etc, back to themselves) except they still both have a lot of secretions which they are coughing up mostly, so I will watch them over the next few days....

Here are the photos!!

Wednesday, March 2, 2011

Sick babies quick update

Today Skye seems much better!! No suctioning last night or today... still lots of secretions, but she is coughing them out herself now. Henley woke up so snotty with a horrible rattly cough (although his chest sounds clear), so I have given him breathing treatments as well. The pulmonologist has also ordered him some prednisolone so hopefully he will get much better in the next 24 hours like Skye did. Now I am sick!!! (hardly surprising considering I have been coughed and sneezed at non stop since Sunday!) Keith is the last man standing!!! Warm baths and advil for everyone!!!

Tuesday, March 1, 2011

Oh No The babies are sick!!!

Both the babies got sick!!! This is the first time Henley has ever been sick and Skye has not been sick since last summer......

We went to the pulmonologist on Friday and I'm thinking that must be it as Skye started to get very junky Sunday daytime. I had to dig out the old suction machine which had been in storage (not used since November) and suction her a couple of times overnight on Sunday as she was gurgling in her trach. I have also uncapped her to let her cough everything out.  Both babies have very snotty, runny noses and Skye had a slight temp yesterday. I have been giving her 4 breathing treatments a day and our pulmonologist called in some prednisolone liquid for her. Henley is toughing it out, although he is sneezing and pouring snot everywhere and I am giving them both Advil day and night. Everyone's chest sounds clear so far, and Skye's scretions are plentiful but white and I'm suctioning every 6 hours or so, but its no antibiotics right now.....

Saturday, February 26, 2011

Summer

Today is a year since Summer died aged 9 1/2 months old, and to mark this I have attached some photos and a couple of videos of her to remind everyone how beautiful and special she was.....


Summer was born at 25 weeks

She loved kangaroo care

She loved being held

She didnt like being messed with !!

Summy made it off the vent and did well till RSV struck her and Skye

Summer and Skye

Summer battled and won against terrible odds

Thanksgiving 2009

Our daily chat

Summer comes home!!!

A sleeping beauty. She died unexpectedly a few hours later....


Here are some video shorts of Summy 'in action' I had so many pictures and videos it was hard to choose

                         She loved her pacifier. After she was trached she had it in day and night.

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                                  She loved to get out and look around at what was going on !

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                             But most of all she loved lollipops and sweeties syrup!!

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Friday, February 25, 2011

Pulmonology

So things have been very quiet which I'm not complaining about!!! Erin came to visit the babies and as usual they had a great time and she took some fantastic photos of the babies which I will share - I think she will now be the babies' official photographer!!

Today we had the pulmonology appointment and Henley's weight was a great big 28lb 7oz but I was disappointed that Skye was only 23lb 1oz, same as last month. This is the first month she has been eating by mouth and she did not put on any weight!! Usually every 3 months GI increase her pediasure amount but the last visit they told me to keep it the same which I thought was strange. As she has eaten food by mouth and not increased her weight, I will increase it myself at least till her next weight check. here are a few photos of the babies after some cake!!


Saturday, February 19, 2011

Lots of babies !!

This week we were visited by my friend April and her triplets again and this time I took some photos!!! We took the babies to the park in my subdivision and then we stayed at home, gave them baths etc and as always they had lots of fun!! This week we have 2 more visits from nurses we met along our NICU and home care journey and that keep in touch - the babies always love the attention and of course I love to hear how big they look!! Friday is also pulmonology day so I will be able to report on their weights !!!

Till then here are our latest photos!!

This is typical Henley, Skye doesnt stand a chance poor baby
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Henley helps to clean the floor!!!


Thursday, February 10, 2011

Photos and Videos !!!

Finally, as promised are some photos and video updates on the babies!!!!

 No doctors visits since the trach visit last week, so we are all quiet now until the pulmonologist at the end of the month. We only have 2 synagis appointments left... the end of an era!!! I guess they will still want to see Skye on a regular basis as she still has a daily breathing treatment, but its progress !

Skye has not been a superstar on the feeding front, and she hates being spoon fed. She will however eat if you give her food, walk away and ignore her (if she's hungry). She will eat beans (like chili beans) fries, rice balls, BBQ chips and chicken. She will also drink pediasure only if it is squirted into her mouth. We are still waiting for the ST consult, maybe they will have some more ideas???

Here are the latest pics

Playing in the garden with daddy

cute updo

Action man

big hair !!


Playing with the curtains
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Henley's first (unsuccessful) baseball lesson (he just wants to RUN RUN RUN)
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The acrobat
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Thursday, February 3, 2011

Preschool!!!!!

So now you are all over the shock of preschool, I can update you on today's visit to the school. Its a Montessori school where they actually teach the kids, and there are a maximum of 6 kids in each class. Henley went in this morning for an hour to meet his classmates and so we could find out more.

They were very good about the whole germ issue and they do disinfect everything each night, and of course class sizes are small (Henley will make 5 in the class). They also told me if there was anything else I wanted them to do they would try to accommodate my requests, so I couldnt really ask for more.

Henley LOVED it. He ran around, jumped on all the toys (they have playmats, roundabouts, lots of stuff) and interacted with the others. He did take a toy off another boy, but the teacher took it back and told him the other boy was still playing with it, and Henley was like 'ok' and went and played with something else. I also like that they have a toddler playground outside with some really great fun but safe equipment and each morning they play outside for an hour before it gets too hot. They they have a snack, then they do 'schoolwork' till 11.30. That is Henley's finish time and he would go twice a week.

The upshot of all of this is that we will enroll him and he can start in April (end of RSV season). When it was time to leave he didnt want to go and I had to carry him out as he refused to walk so I know he will be fine......

Ok, next post will include photos I PROMISE!!!!

Wednesday, February 2, 2011

Trach Doctor

Continuing with our theme of Dr appointments, today we had Skye's 3 month visit to the ENT Doctor, which is never a big deal, he just checks she's doing good and has a quick look down the trach. Everything looked fine as usual so he will see her again early May and we can then schedule another bronchoscopy with (again) a view to removing the trach if all looks ok. He reminded us that she looked really tight last time but he's hoping the dilation he did to her trachea at the time will have helped widen it.... we will see. When she cries, I can still hear a kind of 'stridor' noise when she inhales which was how this all started so who knows....

Tomorrow (you will all be shocked) we are taking Henley to see a pre-school!!! He is seriously bored at home and he just needs play more/run around etc to release some of his crazy energy so although I have a lot of reservations about this, I've started to investigate our options. The babies have had their flu shots, are still getting synagis and I would wait another month to enroll him so that the worst of the cold/flu season will be done with. The hours are only 3 hours a day twice a week, but I think it will be enough for him!!!

....Feeding Update........... Since my last post, things went downhill for a few days and Skye decided she didnt like the whole eating deal anymore. The last 2 days I have done something new and so far so good. I let her mess around and play eat in the mornings (which is what she usually does) i.e she puts food in her own mouth  and lets it fall out or chews it then spits it out, but in the afternoon I skip her 3pm tube feed then I feed her by mouth at 6pm. So far she has been genuinely hungry by then so she has been eating. I also spoon feed her easy foods like mash/mashed sweet potatoes not letting her pick up and mess with the food. She has also been drinking pediasure if I squirt it into her mouth and she seems to like it. Afterwards I feed her half of her scheduled tube feed and then throughout the evening and till I go to bed, I just keep putting another 60mls through her tube (I only feed using a syringe, never a pump) untill she has meade up the feeds I witheld earlier in the day, so she's not losing any calories. its a work in progress....