Jason's tube wean via net coaching at home has started. To read all about the home wean proceed to the second to last tab on the left hand side of this page - called Tube wean - net coaching.
Well tomorrow is "D" day. Our second attempt at tube weaning Jason begins. How am I feeling? Well to be totally honest I am feeling quite anxious and nervous about it all. I know in my heart that Jason is ready for this. He is ready to start eating and now we just need to make that happen. I know it’s not going to be easy and I know that Jason is really stubborn and this isn’t going to just happen easily. It’s going to take a lot of time, effort and patience BUT we can do this!!
Jason is feeling better. The gagging and vomiting is still there but I believe it will be there until this dam tube is removed. Yes the same dam tube that has kept him alive all this time but seriously this tube also has caused us endless problems. I am grateful for having it and grateful for technology that a tube in my son’s tummy can feed him, keep him nourished and alive. But now we need to get rid of it! So what’s the plan for tomorrow? Well Jason’s milk will stop tomorrow morning at 4am via the pump. The plan for the first 3 days is not to feed him via the tube before 2/3pm. Using the same principals as we did in Graz we will encourage him to eat and drink throughout the day. Have food and drinks around him all the time and we see how he goes. We will be in contact with Graz advising us what to do. I have already been in contact with the professor and they are standing by us waiting on the other end of the world to see how Jason does. Please everyone keep Jason and us in your prayers. We really need Jason to get that will and hunger to eat and we need this tube wean to go as smoothly as possible. Word of warning, the internet is VERY slow here so if you don’t hear from me for a day or two,it’s not my fault, it’s the internet connection. So you may find one day you don’t hear from me but the next day or two you have two or three updates to read. I know you all are going to follow and support us and I really appreciate the support that we get. So seriously PLEASE leave comments. Your comments really do help keep me sane and motivated. I need to know that besides you all reading the blog. I need to know that you are there and with us encouraging us. I have been up since 3am and it's 5:15am now. Actually I have been up most of the night. I just cannot sleep with the amount of things on my mind right now. I have listened to the birds start chirping from about 4am and slowly watched the sun rise!
Yesterday at work I got an sms from the school teacher to say that Jason was not himself, wasn't playing, just doing nothing which she obviously thought was strange. Anyway Bruce went and fetched him and Bruce said that he actually got quite a fright. Jason definitely wasn't himself. Bruce thinks that he actually was dehydrated. Being at the new little "holiday school" they don't give him water via the tube for obvious reasons and obviously Jason doesn't drink yet. The temperature yesterday must have been around 30 degrees and so humid so obviously that could dehydrate him. After giving him water he perked up again and was fine. When I got home he seemed fine, running around and fighting with dad with which cartoon to watch. But I heard his chest and a definite wheeze was there. Not so bad but a wheeze. Anyway we had swimming that afternoon, the weather was so hot and his chest didn't seem to bad to me (I have a stethoscope so did listen). We went to swimming which he had an absolute ball. Giggled his whole way through the lesson and did so well with Mandy doing all the right things. Really progressing and coming along nicely even if I say so myself! The rest of the afternoon was pretty much our usual day of feeding and playing a little. After his bath again I heard that dreaded wheeze. So out came the nebulizer and I have started nebbing again. After a busy day Jason fell asleep pretty early and when I checked on him later that dam wheeze is definitely there. A whistle coming out his mouth and nose! Now Jason has been on two doses of antibiotics the past 3 weeks. We have battled to get him past this and to a stage where we don't have to give him any medicine. That is just not happening. His last dose was on Tuesday night and the wheeze started yesterday (Wednesday). We just can't seem to win or beat this thing. Honestly I am so tired of this. I am so tired of trying so hard non stop. So tired of watching my little man go through what he goes through on a daily basis with his gagging, his vomiting, his diarrhoea and all his illnesses he gets. No matter what we do we just don't seem to win this battle. We go for polygam in hospital every 3 weeks for his immune system and still he gets sick. I don't know where this wheeze came from but I have a feeling that from vomiting the way he has been he possibly aspirated fluids into his lungs. Look it's not "that bad" but seriously at the moment any set back for me is "bad". The wean is meant to start next week, everything is all set. The registration fee has been paid, Graz is ready, granny has been out and about and brought all sorts of foods for Jason and for us mentally we have been preparing for this for weeks now. Last night I sat on Jason's bed just crying, listening to his feeding pump pumping milk into his little body. I lay my hands on his little chest feeling the wheeze vibrations and I just prayed!! I so want this all to go away. I so want God to heal my little man for good. I so want my little baby boy to start eating now and to be able to throw away all medical equipment and medication. Everything that is actually feeding, helping and protecting him! I just don't get why it's so much to ask? All I want after 4 and a half years is for my son to be healthy and to eat. Something that is meant to be the most natural thing in the world. I know, I know, I know what's another week or two, we can always postpone the wean but seriously why can't something just go smoothly for a change? Why can't we just go away for the December holidays without the cooler bag of medicine, the nebulizer, the feeding pump, the pump stand and everything but the kitchen sink? I want to for once be able to go on holiday with my family and have a good time without any worries. I want my son to be able to go for a swim in the pool or the sea without having to tell him or others that "no he can't swim because he is snotty or chesty and may get sick". We have spent so many holidays - Christmas, New Years, Easter etc. in hospital or at home sick and nebbing or pumping medicine into my little baby's body and it's not fair! This is what I mean when I say Jason can change from hour to hour. One minute he can be absolutely perfect and the next minute he is sick. Out of nowhere!!! So ja this mommy is not happy at the moment. I know I will be fine, Jason will be fine, Bruce will be fine, we will get through this. Jason could wake up just now from sounding terrible to being absolutely fine again and all this worrying is for nothing. Who knows? But the point is I am so tired of this. The saying goes "God will not give you more than you can handle" well seriously I want to know "why does God trust us so much?". Who knows what is going to happen? I am not sure if I am going to work just now or if we are headed to the paed later? Tomorrow we are meant to be leaving for our holiday and at the moment everything just seems to be "hanging in the air" for me. Yes I may sound so dramatic about all of this but seriously when you go through so much kak non stop you get to a point where you just want and long for something to go smoothly for a change. Something like Jason's second wean to go smoothly would be fantastic but why can't we have it easy for a change? I cannot go through what we went through in Graz last year again. That was one of the hardest things I have had to go through in my life! I am not expecting the wean to go smoothly or easy but seriously I didn't expect Jason to get sick to throw a curve ball in to add to the stress! Why do I keep this blog and this website going? I guess it's therapy for me to "write down" my thoughts and feelings. Also I know there are so many people in this world that are going through similar problems with there children and if I help them in one tiny little way, that's good. It's nice to know that you are not the only one going through something as difficult as trying to get your child to eat!! Yesterday in Clicks I was standing in the queue waiting to pay and obviously in all these shops they have rows and rows of sweets and chocolates displayed right where you wait to pay. This lady in front of me says to her (must have been 4 year old) son. "If you ask one more time for a sweetie I am going to give you a hiding". You know how much I long for my little boy to ask me for a sweetie??? Well two more sleeps and we are off down the coast on our holiday. Jason is getting there. It's hard to tell, he changes from day to day but I think he is getting better. Still the odd gag and vomit which I wish would go away now. Stresses me because I want to get moving with this wean and don't want to delay it because of sickness and vomiting.
Anyway this week Jason is at the little "holiday school" and he is settling in nicely there. That's the great thing about Jason, he really doesn't mind change much. Dashes in the class like he owns the joint and joins in with the other kids. They have been doing holiday crafts and lots of fun and exciting things. I am impressed, on Monday he had a spoon of yogurt and Tuesday he tasted a cup cake. Very impressed considering he is in a new environment with new kids and new teachers. That's my boy!!! Today is swimming which I hope this weather improves for and then tomorrow we have speech and OT. Then lots of running around finishing up everything before we leave. Making sure I have all the necessary medication for "just in case". Still waiting for the bank transfer to pay for the net coaching fees and then they will send me the forms to complete. Hope that happens tonight so we can get moving with everything. Still nervous about the wean but I guess that is normal. Would be easier knowing that he is 100% but we will see what happens. Our little man is starting to get better after ages and two courses of antibiotics.
We battled with a really snotty nose, lots of mucous, lots of gagging and vomiting. Last Tuesday we had polygam in hospital for the day so were able to see Jason's Paed to examine him and figure out what is going on with him. Perfect timing when Dr. P came to see us Jason was so clogged up and even slipped on some of Jason's spit on the floor - oops!! Jason was basically vomiting this thick mucous which was obviously coming from the nose, dripping down his throat and Jason doesn't swallow at the best of times so that thick mucous was causing him to gag and vomit. Anyway we had to do another course of antibiotics, some nose drops and some medicine for his chest - it was starting to spread to the chest causing him to wheeze and cough! Well he is finally on the mend and I am happy to say our happy, giggly little man is back. We are back to playing in the garden, playing with the dogs, running under the hose pipe, going to the beach etc. And the appetite is slowly coming back too. The other night when I was cooking he stole some onion. Yes onion of all things. The first piece he chewed and swallowed. The second piece he choked on but he seemed to like onion. Crazy little monkey! A few more days to go and we are off down the coast to visit granny and grandpa for the Christmas break. I have registered with "No Tube" to do the net coaching tube wean and I think we will begin properly on the 19th! I have been in contact with the professor from Austria and it's all systems go!! I am very nervous about the wean. We have been through this before in Austria so it's not like we don't know what we are doing but I don't know what to expect and how Jason is going to react? Anyway I would love to just go on holiday and forget all about trying to get Jason to eat but NOW is the time. Jason MUST start eating and I really believe it in my heart he is ready!! I know he can do this and I have a huge support network to keep us going and motivated. I know it must be hard for most of you to understand how a 4 year old won't eat. It seems so simple, stop feeding him and he will eat. I know it's crazy but it isn't that simple. The only people that will actually understand is those that have been through it themselves and those that have or have had children with feeding tubes that don't eat. Anyway most of you have walked this journey with us and most of you have watched the difficulties and the progress that we have had with Jason. All I ask from ALL of you is to continue this journey with us every step of the way. I am going to need all you support and all your prayers. Pray every night for Jason, pray for strength, understanding, encouragement and the WILL to eat. Something that is so natural for us is so unnatural for Jason. It's going to be a long process for him to trust food, learn to swallow and get that taste and hunger for food. He is a tough cookie but I believe he will do this!! I just really hope and pray that once Jason is eating normal food he will be a lot healthier, I can throw away all his medicine, keep him medicine free, no more night pump feeds where I am up at least 4 times a night. No more vomiting and gagging. No more infections from tubes. No more chronic diarrhea and nappies. Hopefully we can get this toilet training off the ground and have a happy, healthy, eating, talking, potty trained little man soon!! This week has been a tough one for my little man. The gagging and vomiting has continued and just continued to get worse. On Saturday last week we had quite a lot of vomiting and gagging episodes and Sunday the same thing. Also on Sunday started doing lots of poos as well. Monday morning he woke up late, not his usual time and I just knew it, something was up with him. My poor little man woke up gagging and vomiting. His temp was fine at first but he continued to vomit and moan and lie there clutching his towel nappy as comfort to him. When I checked his temperature later his temp had suddenly risen to 38.8. That was the deciding factor, I knew something was up. He had the temps now, the blotchy red skin, the gagging and the vomiting. I have been thinking that maybe salmonella again because he has had the gagging and vomiting and loose stools for a few weeks now. But when I took him to Dr. P his paed he was examined and it turns out it was his left ear that was giving him problems. His ear was inflamed and had fluid in. Thankfully his chest was clear!
So unfortunately Jason is on antibiotics again and celestamine for his nose. His nose is a chronic problem. He has chronic sinusitus and a lot of the time his nose causes his problems because of the post nasal drip he has. He has to be on medication long term for that as well as a nasal spray. He takes after his mommy with the nose problems unfortunately. It's strange though. One minute Jason can be absolutely fine and the next minute man down. It is very frustrating for us we never know when he is going to be ok or not. All we hope is that this will pass soon. Unfortunatly we missed speech therapy, occupational therapy and swimming this week. Everything that he loves and everything that is so important to him. Feeding has had to be slowed down and sometimes a feed has had to be missed altogether to make sure that he is ok, can make school and will come right. Luckily we only missed school on Monday and managed the rest of the week. We did manage some good times this week between the illness. That's what I mean when I say one minute he can be fine and the next minute man down. At school they had their little Christmas party on Thursday which they had at the animal farm. I am so sorry I missed it. Jason in the past has reacted badly to animal farm visits. Sometimes he can be fine and other times he can gag and vomit the whole way through. I think it is a sensory thing to do with the animals and the noise. Anyway I have been told by Jeanette that he absolutely LOVED it. They couldn't believe their eyes. He fed the rabbits carrots by hand, fed the pigs AND he rode a horse!!! I can't believe he got on the horse. I have tried a few times and he normally goes all stiff and there is no ways he will stay there! Well he was on the horse and he had a ball. Jeanette said that she has a picture so hopefully I will get to see that one. When I heard I just burst out crying - so proud of him!! For me this week has been a downer and quite emotional. I have a lot going on in my mind at the moment. Things have been going so well lately, his eating has been going great, his weight gain has been going great and he has just come on in leaps and bounds so this illness to me was a big blow. Also the fact that we want to attempt our second tube wean over December and that is almost here and now he is sick and on antibiotics. I know, I know, all kids get sick. I know that but when Jason gets sick everything comes to a standstill. We are housebound, cannot get out, the eating stops, the feeding gets reduced and the therapy stops. It's hard, it really is especially because I just want my little man to grow and start eating now. Now is the time!! I have been in touch with Graz and they are happy to help with the tube wean via netcoaching!! I do have a heavy heart about the wean. It's so hard watching your child starving and they don't understand why you won't feed them. All the emotions that go into a wean is hard and now with him being sick I am afraid that he is going to lose weigh and not feel well at a crucial time just before a wean. I just have to keep the faith and trust that God is watching over us and he knows and sees what is going on and whatever HE decides will be! I don't know after 6 days on antibiotics it has taken forever for him to improve and get better. I know and Dr. P agrees that this is also the autonomic sensory problem that Jason has. The blotchy red skin is a tell tale sign for sure. I don't know whether it's time to review his medication or whether this is just a sickness. That's the hardest part, we just don't know. Too many questions, too few answers. At least a comfort for me is knowing that Jason is having his polygam on Tuesday so he will be thoroughly examined again and bloods and a blood culture will be taken and we will know more after that! Our little man is such an angel, such an example to Bruce and myself. We watch him feeling so sick but still he gets up and he carries on. He doesn't complain, he doesn't cry, he deals with it. He is such a toughie. There is nothing that Bruce and myself won't do for him. He was the best gift that God could have given us. A parents love for their children - there is no love like it! You will do absolutely everything or ANYTHING for your children. No matter how young or how old they are. They are always in your hearts -they never leave. No matter how close or how far they are, you are their parents and you will do ANYTHING for them!! I never knew this until I had a child of my own!! All is well and happy in the Long household. On Wednesday Jason had 3 spoons of yogurt fed all by himself and some cheese off a sandwich. Such good progress considering he was happy to feed himself with his little friends at school. Huge steps forward for him. Then Wednesday afternoon he had his second swimming lesson with Aunty Mandy. He absolutely LOVES swimming. This time mommy was smart enough to dress him in the car before we arrived at the pool. Aunty Mandy wasn't in her costume yet (we were a bit early) so he VERY patiently had to wait on the step shaking with excitement!! He is definitely a water baby just like his daddy. I am SO proud of him and love taking him swimming because he loves it so much - a real natural in the pool. We missed OT on Monday but speech went really well. Jason LOVES therapy which makes therapy that much easier to go to. Always races in the room full of excitement!!
I have had school on my mind a lot this week. Next year I am going to keep him at the little school he is at. He turns 5 next year and really doing so well where he is. Jeanette and Carol really put the extra time and effort with Jason and they are absolutely fantastic with him. After next year we will have to make some decisions on where to go. I know he won't be able to go to a main stream school. He just would not cope but who knows, a lot can happen in a year. I actually got a call today from the little school I had put his name down and sadly I had to say "nope take us off the list". I would love him to go to a "normal" school but that's just not possible. So we going to have to look at our options. The closest "special needs" school is 45 mins away from where we live but there has been some talk of a special needs school in the area. That would be fantastic because I really don't know what we would do having to drive 45 mins there and 45 mins back if I have to go to work. That's like 3 hours of driving if I continue working close to home, never mind the cost of petrol etc. Oh well we have some time to make decisions and a lot can happen in a year. Polygam I have moved it to 4 weeks this one and next because we will be away for 2 weeks over December. Otherwise Jason has been well besides the gagging and vomiting. I think a lot of it has to do with the car and him over heating as well. Tonight after a really busy day Jason was lying down playing his guitar. Jamming and all of a sudden silence! When I looked he had fallen asleep in the middle of playing a tune LOL. I know this website is dedicated to our little man "Jason" but at the end of the day Jason's little sister is Jason's sister after all and I know everyone is also interested in how my pregnancy is progressing. Today was a really hard, trying day for Bruce and myself. You all know that we have been through a lot with Jason and this pregnancy is very important to us. To us this pregnancy and this little child inside my tummy is a whole new beginning for us, a second chance at the happy pregnancy, birth experience and easy childhood that we didn't have with Jason.
Today was our 21 week scan with the fetal specialist. In South Africa your anatomy scan is not done by your regular gynae, it is usually done by a complete outsider, a thorough check of everything - the blood flow in and out, the heart, liver, kidney, legs, arms - everything. Everything is measured in total detail to make sure that everything is 100% with baby. Now our specialist that saw us today was the same specialist that saw us at 21 and 29 weeks with Jason. Excellent doctor, absolutely brilliant. Going into the scan Bruce and I had absolute no worries, no concerns and we totally were at peace and excited about seeing our little baby again. My pregnancy has been very smooth, no worries or concerns, I have been growing nicely and we have been very happy and excited and at peace with this one. The scan went really well until we got to the part where the doc checked and measured the heart. The heart appeared to have a hole in the wall between the left and the right ventricles (called Ventricular Septal Defect or VSD). It's very hard to explain how this made us feel but I would say the word that best described my feelings were "shattered". The doc looked at the heart at all different angles. Some angles looked totally normal where the wall was perfect then at other angles it looked like the wall was incomplete. I saw it with my own eyes so the doc was NOT making this up!! Anyway the doc decided that he wanted to give it some time, wanted baby to move around a bit and he wanted to take a look again after his next patient. So out the room we went left with our thoughts and total shock and horror. We couldn't believe what was happening. It totally felt like deja vu. We had been through this before with Jason and this felt like a total nightmare to us. For me being the one carrying the baby it's dam hard to imagine that the child you are carrying could have something wrong with it. This new little life you have created and is kicking and moving, has perfect features could have something wrong!! I felt devastated and could not think straight but had to hold it together and not panic until we had a definite answer. Anyway after the next patient we were called in again. Baby was still lying upside down and not in the ideal position for us to see the walls of the heart still. Again doc was not happy with the position of the baby and said that I needed to go and drink something sweet, eat something and walk the corridor in hope that baby would turn. The next attempt still not a great position and we had to wait and go back for the 4th time. I tell you I had already had a chocolate, a buddy bottle coke, a packet of chips and a cranberry liqui fruit. I had walked the corridor, bounced around, patted my tummy - gone to the toilet about 20 times and prayed and prayed and prayed. Outside it was pouring with rain, the wind was howling, my little man had been with granny since 1pm and it was now 5pm - he had missed his afternoon feed and we basically had to drop him off and rush to the doc because we were running late. Boy I watched that rain belting down and I just PRAYED. Walked that corridor and prayed!! I said to God "Lord you say that you will not give us too much that we cannot handle", "well God I cannot handle another difficult pregnancy and a difficult child - I need you to hear my prayer and give Bruce and I a healthy little baby, give us a break". Eventually it was our turn to go back in again (the 4th time) and it was good news!! Baby was in the right position, we could this time clearly see the walls of the heart joined perfectly with no gaps. The doc looked at it thoroughly from all angles and he could not see the same defect that we saw on the first scan attempt. He went over and over it, took picture after picture and it was perfect!! He told us that if he kept going back and there was the same picture, he would be concerned but he could not see the same defect at all, every time he went back he could see two perfect formed heart walls. I cannot explain what happened, we did see that gap, it was there. The doc said that it could have been a bad position that baby was lying in but he is confident that everything is one hundred percent and if he is happy we must be happy. What a relief!! It is tough going from a very worrying prognosis to don't worry about a thing but the evidence is there, Bruce and I saw it with our own eyes, it looks fine!! Honestly to me, all I can say is my prayers were answered!!! So yes today brought back SO many memories. They all came flooding back. Jason's diagnosis was totally different from this baby. Jason had low amniotic fluid from about 20 weeks and was growth restricted. He was not developing, growing and gaining weight as he should because the amniotic fluid was not enough for him. So in this case this scan was very different but the feelings were all the same! So after all, after a long day from being at the doctors rooms from 1:30pm to 6:30pm everything is 100%. The doc did say that if we wish he will do another scan in 7/8 weeks free of charge to give us peace of mind. We are going to take him up on that offer for sure!! You know what you tend to bottle your feelings and memories up. You don't forget the past, you never will but you cannot dwell on something that happened and could not be changed. The problem with Jason was there, it happened and we have had to deal with it. Having a second pregnancy with problems would be devastating for us for good reason BUT I have faith that this baby is going to be fine. God is watching over her! Yes it is definitely a little lady and I am sure this little lady is going to be fine and her big brother is going to love her to bits!! It was a very rough day. Bruce and I have been through so much and we ask ourselves why couldn't we just have an easy, happy scan like every other couple out there. Why do we have to go through so much trials and tribulations? I guess it's these tests that make us stronger? I know that through everything I have been through with my pregnancy and with Jason with his reflux, illnesses and feeding difficulties, these trials have made me the person that I am today and I am very proud of the person that I have become!! All of us have to go through difficult times whether it is with a child, a parent, a husband, a difficult childhood, health issues of a family member or yourself or a difficult marriage - we all get through these things and at the end of the day we all grow and learn from our experiences. Who said life was going to be easy hey?? But just remember that no matter what you went through or are going through, with God all things are possible and he is watching over you always and will NEVER leave your side!! Don't look back in anger, look back, learn from your past and move on! As promised here are some pics of Jason's first swimming lesson. The weather was perfect and when we got there Jason had eyes the size of saucers. He couldn't believe his luck when he saw that the swimming pool didn't have a net! I couldn't get his costume on fast enough before he was running butt naked off to the pool LOL.
In my eyes he was an absolute star. Totally loves swimming and water and he was pretty obedient doing everything he should be doing with a laugh and a giggle in between!! Our only problem was when it came time to getting out! Oh boy he was not impressed by that!!! So I think Wednesday swimming is going to be a HUGE hit. Thanks Mandy for fitting Jason in, you are the best!! Yeah having a good week so far eating wise. Soon my little man will be saying "please mommy, can I have some more". LOL
On Friday at school he had 2 spoons of yogurt, a bite of a biscuit and some banana. Yesterday with me - YES with me he allowed me to feed him 4 small spoons of yogurt and today he ate two spoons of yoghurt at school and at home with me 2 nik naks and some tea (he loves sipping tea)!! How awesome is that?? Very proud mommy. Oh yes, forgot about the two fingers of cream (face cream) today. Yes you read that right - face cream! That was a strange one but before I could catch him he had had a second finger helping of the face cream?? Brushing teeth is also going well he enjoys brushing his teeth. Oh and yes he did his first wee wee in the toilet! My little man is getting a big boy! Potty training has been a bit of a nightmare because of the chronic diarrhoea and understaning but lately he will climb on the toilet and sit there. Finally we are making progress - huge steps in my eyes. Only thing concerning me at the moment is the gagging is back and the odd vomit here and there. Not sure why, there isn't a pattern really but it has started again. Not just when eating, periodically throughout the day. His teacher even said to me on Friday that he has been doing the odd gag here and there at school. Jason can gag when he is snotty (when the weather is cold), or when he is too hot and over heats. And of course around food which is pretty normal for him. I hope that will pass. Today we went to look at a possible "holiday" school for when school closes on the 10th December. What a perfect school for Jason. Just up the road, they only have 3 kids at the moment so it is perfect for avoiding illness and for attention etc. When Jason and I arrived it was like he had been going there for months. No bones about him, he ran straight inside to the classroom and started playing with a little boy named Thomas. Well Thomas and Jason got along like a "house on fire", like they have been mates for years. So cute to see and wonderful to see my little man fit in straight away. Thomas even said to the teacher "teacher I like my new friend" - cute man! They are happy to take Jason so for 8 of the days he will go there. The other two weeks we wil be down the coast with granny and grandpa on holiday and for the tube wean! Tomorrow is our first swimming lesson - looking forward to that. I am sure Jason is going to enjoy that. Watch this space for pictures!! |
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