Hello and I am back from a rather long “time out!” I appreciate the new followers that have perused my blog and apologise to the old followers for my absence… but more on that later! We have just celebrated the festive season and in the usual fashion I ate too much, enjoyed gift giving and of course, as a nurse was rostered to work an afternoon shift. This year was an exciting Christmas as it was the first year my eldest child understood the whole concept and it was the very first for my little champion Thomas. As much as I had a wonderful time with my babies, Christmas time also brought with it some relived trauma and sadness as it was Boxing Day last year when I had my first preterm labor scare at just 22 weeks. Until that point, my pregnancy had been fairly run of the mill (with the exception of hyperemesis) but certainly from the point of view of my baby, things were going as well as possible with the 20 week morphology scan showing a perfect, thriving baby. What happened between in those two weeks I will never know, but Boxing Day 2013 at 11pm was the moment I realised I would not be delivering a full term baby. Plenty of women have early labor scares and go on to have perfectly healthy babies, but as I sat on my toilet contracting and wiping a blood tinged mucous plug my heart raced and in that moment “Mother’s Intuition” kicked me harder than the contraction and I suddenly just “knew” that Thomas and I were in trouble. 2 weeks later I was admitted for an epic 7 weeks of hospital bed-rest and little did I know, the start of the most difficult year of my life so far. As the 12 month anniversary of this loomed, my mood hit an all time low and suddenly after months of brewing a “meltdown” I finally fell off my perch temporarily. Suddenly I gave up on therapies for Thomas, I was snappy at my 3 yr old, had an insatiable need to sleep and was doing silly things like pouring half a coffee into my handbag instead of drinking it. My husband noticed my mood and upon gently questioning I admitted that I just felt exhausted and stripped bare of all my emotional and physical resources. I can only say thank you to him as for the most part he endured my temporary episode with patience and understanding and I really believe this helped me to pick myself up, dust off and keep going much sooner than if I’d also been subjected to criticism and attitude. I think many mothers of healthy and thriving children can relate to the sudden “brick wall” but for those of us with extra needs, the pressure is even greater and the brick walls seem to come more often.
I said that this meltdown had been threatening for a number of months, so let me take you back there. 3 months ago Thomas received his official diagnosis – quadreplegic spasticity CP. Essentially this means that all four limbs are affected by stiffness and limitation of movement. Further down the line he will also be diagnosed with a number from 1 to 5 that describes the degree of impairment, 1 being minimal and what they call “non disabling”… 5 being non-ambulant, poor or no use of hands/arms, poor/no head control and core strength and a myriad of other possible issues not limited to seizures, vision impairment, non-verbal and unable to eat orally. 5 is not the number we’re aiming for, however statistically speaking, children with quad CP tend to be in the higher range of classification and as such, have a poorer outlook on future capabilities. I do my very best to be positive and not let this medical way of diagnosis affect my hopes and dreams for Thomas, but at the time of hearing this we were seeing very little progress despite intense efforts to engage and advance Thomas. At just 5 months corrected age, Thomas was already showing signs of early contractures of the hands, had slipped several percentiles BELOW the growth chart, had significant tightness in his arms, legs, hips and back, yet less head control than many newborn babies. He was refusing milk feeds, refusing solids and gagging with any attempt at eating. He had major sensory processing issues and leaving the house was difficult. He had his strengths, mainly that his vision seemed to be developing well and he was smiling, cooing, laughing and enjoying social interactions and had remained as far as we were aware seizure free – all of these things we counted as a major blessing but in the midst of his very obvious physical delays we were feeling incredibly disheartened.
As the weeks and months passed, it also was becoming harder to avoid comments and questions from not just family and friends (whom we have been very open with) but with strangers too. The questions about why he wears hand splints, or questions about his age vs development were getting harder to deflect. I was extremely taken aback one day when a woman straight out asked me what syndrome my child had. In some ways, the directness was actually refreshing as she didn’t beat around the bush or try to fish for the answers, she simply spoke her mind making it much easier for me to say “he has cerebral palsy” and that was that. But that moment also made me realise that he no longer just passes as a little baby, it is now becoming clear that strangers will notice… and comment. In time I will grow resistant to their stares and curiosity but right now, it hurts like hell and I miss the days when a comment from a stranger was simply to congratulate me on my beautiful baby. Around this time, several of my friends with babies of the same age were starting to share their excitement at the leaps and bounds their babies were making – I watched with sadness as they chased after sitting and crawling babies, took objects out of curious hands and delighted in messy food covered faces. I smiled and adored their baby as a good friend should, but my heart broke as my own baby laid in my arms or on a playmat, unable to move or reach for toys, struggled to hold his head up and kept his hands tightly fisted. I wished for him to have chubby legs and not the permanently bent legs from muscle spasticity that looked as though they may just snap off. When I am just with Thomas at home doing our thing it is easier to just see him as he is, and not as a child with CP, but when I leave the house I am in a world where his differences are cruelly thrust into my face time and time again. Still, I kept my face brave, did my best to stay positive and smile in all the right places but inside I knew that soon my weakness would give in and although I tried to blog my thoughts, I simply could not express the things going on inside me, until now.
With all of that said, I want to share where Thomas is at now. I have seen some exciting improvements in him more recently and his paediatrician a few weeks ago was so pleased and surprised by how he had progressed since the last visit when his CP was diagnosed. Many of his improvements are difficult to quantify but to those of us who are watching his progress closely, they are undeniable and fill us all with that little bit of hope we need to keep chugging along. For one thing, I mentioned that his weight was becoming a real concern and there were threats of returning to nasogastric feeding or even a surgically inserted feeding tube into the stomach but in 3 months Thomas has had some wonderful catch up growth and is now sitting around the 2nd percentile for weight and 10-15th for length. He is still a tiny little thing but as long as he stays on the charts we won’t be going down the artificial feeding route. I anticipate in time it will happen, but the longer we can hold off the better. Even better than the weight gain is his interest in solids – he has progressed from completely refusing solid foods to actually being excited to try the newest food and at times even demanding to be fed more! We are taking solids very slowly and cautiously and tend to only introduce one new food every week or two as he does struggle with sensory input and so new flavors throw him, but when he gets the taste for something he can’t get enough… here is a pic of tonight’s dinner effort, salmon and avocado…
I should also mention that his head control has improved heaps! Comparatively to other babies he is still very weak in this area, but a few months ago he would not have been able to sit up in a chair like this for more than a minute or so before his head was flopped to the side. Today he sat up proudly for a good 10-15 minutes while he enjoyed his dinner. He is still requiring a lot of support with sitting and when being carried but as time goes on, we are finding we can give him just that little bit less support and that he tires less quickly. Speaking of tiring, something I have noticed recently is his periods of awake time are increasing – he is now managing to be awake for about 3 hours at a time, followed by 1.5-3hrs sleep then another big awake time. This is a major change as he was sleeping 18hrs a day and getting very irritable during wake times. I believe he got into a cycle of poor weight gain from not having energy to eat, but then being excessively tired from poor growth. The constant sleep also made it difficult to find times to engage him in play and therapy. His sleep requirement is still above that of a nuero typical child, though I would now call it manageable whereas previously it made life difficult for everyone (think planning a day around a baby who needs constant sleep).
Here is another one just to show how much stronger he is… it is also a beautiful photo that I couldn’t resist sharing of my gorgeous little kiddies!
This pic shows that he’s still having some issues with those little hands. He wears splints several hours a day to help keep his thumb out as it likes to stay tucked in there. He is making more efforts to reach and grab for objects but with a thumb that is tucked in it is difficult for him to hold things. As he is getting older, language will soon be able to help – he has already learned to understand the word “open” and will sometimes respond by opening his hand. At other times, the increased tone makes this task too hard and he will tightly fist his hands.
Another little party trick he has recently acquired is rolling, both front to back and back to front. This is a skill that we are trying to tweak though, as his method of doing it is not ideal. On one hand, it is brilliant that he is doing it, on the other, the way he is doing it does not encourage his muscles to develop properly and therefore does not encourage progress towards sitting… so we do a lot of rolly pole practice on the floor.
As you can see, he is a very smiley little boy and honestly, he is one of the most delightful and social little babies I know. He lights up whenever we talk and play with him and he was showing us how clever he can be poking his tongue out and licking his lips. This really gives me hope that he may eventually communicate – talking is a complex activity that requires the intellectual capacity to understand words, which he is demonstrating he has, but also requires control of the oral muscles to form words, I think he will be able to do this at some stage, but I do expect a delay in speaking and I think he will have trouble making certain sounds… but that is all yet to come.
There are many other things that we continue to work hard on, like gradually desensitizing him to unfamiliar environments. We talk about his “safe zone” – that being home, the hospital or his daycare home. In these places his personality shines and he is very responsive to interaction. Most other places, especially those with high ambient noise like shopping centres are exceptionally difficult for him to cope with and he disengages very quickly. It is a work in progress but one that is very important to overcome as this impacts quite heavily on our family, though I will talk about this another time. Overall, Thomas is going to have very significant challenges but today as I massaged and stretched his tight little legs and he “talked” back to me I suddenly felt the weight of the last few months and in particular weeks lifting. That deep breath in that makes me realise I CAN do this and that acceptance that things will be as they are… that it will always be a difficult road for us but that 12 months ago when I feared losing my son at 22 weeks gestation that this journey, that Thomas… is not the worst thing that could have happened. And on that note, I leave you with a beautiful photo from Boxing Day family lunch…